rose
08-23-2008, 12:55 AM
That's great news! What a surprise, right? Have a safe trip out there. We'll be waiting the hear how it went. :)
View Full Version : Scared Dad... Things seem to be getting worse.
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crystalkk
08-23-2008, 06:10 PM
Robert,
Have a safe trip, and keep us posted.....
Have a safe trip, and keep us posted.....
lovelily
08-24-2008, 07:08 PM
Hi Robert!
Ditto on the safe trip, and prayers for good answers! :)
Ditto on the safe trip, and prayers for good answers! :)
rose
08-26-2008, 10:28 PM
So Robert..... any news?
laurel
08-26-2008, 11:56 PM
So Robert..... any news?
I am thinking he isn't home yet Rose. Appointment in Utah yesterday, and bet you dollars to doughnuts that they had him hang around for a few tests today, and then back to Wyoming perhaps tonight or tomorrow. I am anxious to hear as well <g>.
Laurel
I am thinking he isn't home yet Rose. Appointment in Utah yesterday, and bet you dollars to doughnuts that they had him hang around for a few tests today, and then back to Wyoming perhaps tonight or tomorrow. I am anxious to hear as well <g>.
Laurel
planningguy
08-28-2008, 03:32 PM
Sorry to keep people in suspense... We got in late last night (a little after midnight). We had wrapped up medically by Tuesday, but my wife wanted to pop in and see a friend.
My news is kind of mixed. I wish I had something definitive, but at least we have a little clearer direction.
Dr. Singleton et al ran me through the basic neuro eval, then NCS and EMG. They tested my right leg and arm, and crosschecked one point on my left leg. The good news is that for the areas they tested, the EMG results were all within "normal" range. Once I got over the odd feeling of the test and could relax my limb, all was quiet on the western front. I'm taking that as a win for now :)
The frustrating news is that I still don't have an answer on what is causing my symptoms. They declined to test my neck and tongue because there wasn't noticeable atrophy (of the tongue), I could pass the clinical tests for tongue dexterity, and I don't have a noticeable speech impediment. Dr. Singleton gave me some ideas, and I am being scheduled for a muscle biopsy in the near future.
The other good news is that, as of right now, motor neuron disease is not in the forefront of considerations :-D.
The discussion with Dr. Singleton did raise a number of questions for me. He used slightly different terminology than I have seen here or elsewhere. I will write more when I have time to really write and wrap my brain around it all.
Thank you all for rooting for me. I wish I could have written sooner.
Robert
My news is kind of mixed. I wish I had something definitive, but at least we have a little clearer direction.
Dr. Singleton et al ran me through the basic neuro eval, then NCS and EMG. They tested my right leg and arm, and crosschecked one point on my left leg. The good news is that for the areas they tested, the EMG results were all within "normal" range. Once I got over the odd feeling of the test and could relax my limb, all was quiet on the western front. I'm taking that as a win for now :)
The frustrating news is that I still don't have an answer on what is causing my symptoms. They declined to test my neck and tongue because there wasn't noticeable atrophy (of the tongue), I could pass the clinical tests for tongue dexterity, and I don't have a noticeable speech impediment. Dr. Singleton gave me some ideas, and I am being scheduled for a muscle biopsy in the near future.
The other good news is that, as of right now, motor neuron disease is not in the forefront of considerations :-D.
The discussion with Dr. Singleton did raise a number of questions for me. He used slightly different terminology than I have seen here or elsewhere. I will write more when I have time to really write and wrap my brain around it all.
Thank you all for rooting for me. I wish I could have written sooner.
Robert
Al
08-28-2008, 03:58 PM
Not a problem. Fill us in when you get time. As we are not doctors our terminology will be different. We may be more knowledgable than them but they're smarter. Just ask them. LOL. Glad your news wasn't bad. Puzzling, but not bad.
AL.
AL.
CindyM
08-28-2008, 04:10 PM
Hi Robert. I am sorry you have no definate answers but I can assure you that you are in very good company! LOL. :-D (Not to toot my own horn too much...) Take it easy, Cindy
awieleba
08-28-2008, 04:14 PM
RObert,
Well, for now 'no news is good news'! I wish I could abide by the same principle. You must feel a relief to have the emg and at this point is 'clean'. That is good news! Let us know what other options they are tossing around, maybe it will help one of us!!!!
Take Care,
april
Well, for now 'no news is good news'! I wish I could abide by the same principle. You must feel a relief to have the emg and at this point is 'clean'. That is good news! Let us know what other options they are tossing around, maybe it will help one of us!!!!
Take Care,
april
rose
08-28-2008, 09:47 PM
Fill us in when you're ready. I'm sure there was a lot to take in. Is there a plan of attack?
brendapals
08-29-2008, 12:37 AM
Hey Robert,
Glad you got that trip over with-hope you get well rested over the long weekend.
I will continue to pray for us all,
Keep the faith,
brenda
Glad you got that trip over with-hope you get well rested over the long weekend.
I will continue to pray for us all,
Keep the faith,
brenda
planningguy
08-29-2008, 01:13 AM
Thank you all for the kind words and encouragement. It means so much to me to know that there are people far and near who hope and pray for the best.
I finally have a little more time now that work is done, and the kids are in bed.
For the most part I felt like the trip was helpful, however there were some things I felt frustrated that they didn’t probe, and I have some questions about the direction Dr. Singleton recommended taking.
The neurological exam was pretty straightforward. No abnormal reflexes (though they did not test for a couple I thought they would like jaw jerk), and no impaired motor skills. No clinical weakness, though strength is so relative. Like most dad’s, at my best I could lift my oldest over my head, moved the washer and dryer into their nook by myself, and took the scouts on a 50 miler. Even on a bad day I think I can resist the petite twenty something resident trying to push my foot in a direction I don’t want it to go.
The doctor did probe more by asking me how I felt in terms of my maximum strength, and how long it took me to recover after exerting myself. He did not seem to do anything other than note the sensory symptoms, and anything related to swallowing (this was the part I found frustrating). In fact he said he was not sure how the swallowing fit in. What he said was most important was finding out the type of cause to formulate treatment options. Though I was frustrated, it did make sense to me.
Here is where he began speaking in terms that are a little different from what I am accustomed to (And if I was one of his medical students I would have been furiously taking notes with an outline labeled “A, B, C…”). He said that as far as muscle fatigue, weakness, and cramping goes there are basically three types of causes: autoimmune, metabolic, and inflammatory. I guess this is where my first set of questions comes in, and I’m probably appealing to someone with medical experience, or who has done a fair amount of research.
1. Does this framework contemplate ALS? I ask because the dr. was not really worried about ALS, and I was wondering which box he would put it in, or if it goes in a different box altogether.
2. If it does, which of the three types of causes would ALS fit into? I have heard thought that it might be autoimmune, though this seems to be more of a working hypothesis for a branch of research. The way I understand metabolism is that it deals with the release of energy on the cellular level. I ask this question because the dr. felt that the testing done before the U of U ruled out autoimmune causes (which is interesting because up until my consult, both my PCP and my local neuro mentioned it as a possibility). He also felt the EMG pointed away from metabolic causes, though he wanted to perform the biopsy to be sure.
3. Where does CIDP, peripheral neuropathy, and MG fit in this model? These have all been possibilities for me at some point, and I wanted to how the testing done so far fit in.
In the end Dr. Singleton felt that the best next steps were to perform a muscle biopsy (to rule out metabolic causes), and to have me see a rheumatologist. He reason was that he felt that my issues were likely to be related to an inflammatory cause. So I guess this is where my next set of questions comes in for those who have been referred to a rheumatologist as well as part of diagnosing their particular illness:
A. What types of inflammatory diseases are there that your rheum was looking for? I guess this is where I really get lost because I thought that rheumatologists dealt with connective tissue and immunology. Apparently, like in the case of CIDP, you can have inflammatory issues with the peripheral and central nervous system as well. Plus I thought that something like CIPD was considered to be both inflammatory and immune system related.
B. Do inflammatory diseases present with sensory symptoms like tingling and vibration? Gosh I hate to throw this in there, but what about twitching and fasciculation? (Laurel has already mentioned previously that CIDP is one that does).
If any can help me get this sorted out I would appreciate it.
Sorry for the long post. It just seems to be a crossroads moment for me right now, and we all know that unless you are actively involved in your health care you can twist in the wind for a long time.
Robert
I finally have a little more time now that work is done, and the kids are in bed.
For the most part I felt like the trip was helpful, however there were some things I felt frustrated that they didn’t probe, and I have some questions about the direction Dr. Singleton recommended taking.
The neurological exam was pretty straightforward. No abnormal reflexes (though they did not test for a couple I thought they would like jaw jerk), and no impaired motor skills. No clinical weakness, though strength is so relative. Like most dad’s, at my best I could lift my oldest over my head, moved the washer and dryer into their nook by myself, and took the scouts on a 50 miler. Even on a bad day I think I can resist the petite twenty something resident trying to push my foot in a direction I don’t want it to go.
The doctor did probe more by asking me how I felt in terms of my maximum strength, and how long it took me to recover after exerting myself. He did not seem to do anything other than note the sensory symptoms, and anything related to swallowing (this was the part I found frustrating). In fact he said he was not sure how the swallowing fit in. What he said was most important was finding out the type of cause to formulate treatment options. Though I was frustrated, it did make sense to me.
Here is where he began speaking in terms that are a little different from what I am accustomed to (And if I was one of his medical students I would have been furiously taking notes with an outline labeled “A, B, C…”). He said that as far as muscle fatigue, weakness, and cramping goes there are basically three types of causes: autoimmune, metabolic, and inflammatory. I guess this is where my first set of questions comes in, and I’m probably appealing to someone with medical experience, or who has done a fair amount of research.
1. Does this framework contemplate ALS? I ask because the dr. was not really worried about ALS, and I was wondering which box he would put it in, or if it goes in a different box altogether.
2. If it does, which of the three types of causes would ALS fit into? I have heard thought that it might be autoimmune, though this seems to be more of a working hypothesis for a branch of research. The way I understand metabolism is that it deals with the release of energy on the cellular level. I ask this question because the dr. felt that the testing done before the U of U ruled out autoimmune causes (which is interesting because up until my consult, both my PCP and my local neuro mentioned it as a possibility). He also felt the EMG pointed away from metabolic causes, though he wanted to perform the biopsy to be sure.
3. Where does CIDP, peripheral neuropathy, and MG fit in this model? These have all been possibilities for me at some point, and I wanted to how the testing done so far fit in.
In the end Dr. Singleton felt that the best next steps were to perform a muscle biopsy (to rule out metabolic causes), and to have me see a rheumatologist. He reason was that he felt that my issues were likely to be related to an inflammatory cause. So I guess this is where my next set of questions comes in for those who have been referred to a rheumatologist as well as part of diagnosing their particular illness:
A. What types of inflammatory diseases are there that your rheum was looking for? I guess this is where I really get lost because I thought that rheumatologists dealt with connective tissue and immunology. Apparently, like in the case of CIDP, you can have inflammatory issues with the peripheral and central nervous system as well. Plus I thought that something like CIPD was considered to be both inflammatory and immune system related.
B. Do inflammatory diseases present with sensory symptoms like tingling and vibration? Gosh I hate to throw this in there, but what about twitching and fasciculation? (Laurel has already mentioned previously that CIDP is one that does).
If any can help me get this sorted out I would appreciate it.
Sorry for the long post. It just seems to be a crossroads moment for me right now, and we all know that unless you are actively involved in your health care you can twist in the wind for a long time.
Robert
CindyM
08-29-2008, 09:28 AM
He said that as far as muscle fatigue, weakness, and cramping goes there are basically three types of causes: autoimmune, metabolic, and inflammatory.
This is important news to me, personally. Thanks for sharing it, Robert. MG is an auto-immune disease. Somebody like Wright will have to answer out other questions. I am hoping that you and I ride off into the sunset, maybe a little too tired to chew or breathe but still around to see out great-grand-kids. :-D
This is important news to me, personally. Thanks for sharing it, Robert. MG is an auto-immune disease. Somebody like Wright will have to answer out other questions. I am hoping that you and I ride off into the sunset, maybe a little too tired to chew or breathe but still around to see out great-grand-kids. :-D
rose
08-29-2008, 10:43 AM
Thank you all for the kind words and encouragement. It means so much to me to know that there are people far and near who hope and pray for the best.
I finally have a little more time now that work is done, and the kids are in bed.
For the most part I felt like the trip was helpful, however there were some things I felt frustrated that they didn’t probe, and I have some questions about the direction Dr. Singleton recommended taking.
The neurological exam was pretty straightforward. No abnormal reflexes (though they did not test for a couple I thought they would like jaw jerk), and no impaired motor skills. No clinical weakness, though strength is so relative. Like most dad’s, at my best I could lift my oldest over my head, moved the washer and dryer into their nook by myself, and took the scouts on a 50 miler. Even on a bad day I think I can resist the petite twenty something resident trying to push my foot in a direction I don’t want it to go.
The doctor did probe more by asking me how I felt in terms of my maximum strength, and how long it took me to recover after exerting myself. He did not seem to do anything other than note the sensory symptoms, and anything related to swallowing (this was the part I found frustrating). In fact he said he was not sure how the swallowing fit in. What he said was most important was finding out the type of cause to formulate treatment options. Though I was frustrated, it did make sense to me.
Here is where he began speaking in terms that are a little different from what I am accustomed to (And if I was one of his medical students I would have been furiously taking notes with an outline labeled “A, B, C…”). He said that as far as muscle fatigue, weakness, and cramping goes there are basically three types of causes: autoimmune, metabolic, and inflammatory. I guess this is where my first set of questions comes in, and I’m probably appealing to someone with medical experience, or who has done a fair amount of research.
1. Does this framework contemplate ALS? I ask because the dr. was not really worried about ALS, and I was wondering which box he would put it in, or if it goes in a different box altogether.
2. If it does, which of the three types of causes would ALS fit into? I have heard thought that it might be autoimmune, though this seems to be more of a working hypothesis for a branch of research. The way I understand metabolism is that it deals with the release of energy on the cellular level. I ask this question because the dr. felt that the testing done before the U of U ruled out autoimmune causes (which is interesting because up until my consult, both my PCP and my local neuro mentioned it as a possibility). He also felt the EMG pointed away from metabolic causes, though he wanted to perform the biopsy to be sure.
3. Where does CIDP, peripheral neuropathy, and MG fit in this model? These have all been possibilities for me at some point, and I wanted to how the testing done so far fit in.
In the end Dr. Singleton felt that the best next steps were to perform a muscle biopsy (to rule out metabolic causes), and to have me see a rheumatologist. He reason was that he felt that my issues were likely to be related to an inflammatory cause. So I guess this is where my next set of questions comes in for those who have been referred to a rheumatologist as well as part of diagnosing their particular illness:
A. What types of inflammatory diseases are there that your rheum was looking for? I guess this is where I really get lost because I thought that rheumatologists dealt with connective tissue and immunology. Apparently, like in the case of CIDP, you can have inflammatory issues with the peripheral and central nervous system as well. Plus I thought that something like CIPD was considered to be both inflammatory and immune system related.
B. Do inflammatory diseases present with sensory symptoms like tingling and vibration? Gosh I hate to throw this in there, but what about twitching and fasciculation? (Laurel has already mentioned previously that CIDP is one that does).
If any can help me get this sorted out I would appreciate it.
Sorry for the long post. It just seems to be a crossroads moment for me right now, and we all know that unless you are actively involved in your health care you can twist in the wind for a long time.
Robert
Hi Robert, I understand your frustration at not having more answers or a better understanding of what you did learn.
Here's my take on some of your questions. I have absolutely no medical background, but have had the experience of my doctors originally exploring auto-immune causes in depth.
Autoimmune = inflammatory (this is important)
autoimmune = rheumatic (they're used somewhat interchangeable although I don't think they have precisely the same meaning)
CIDP and MG are autoimmune. They could present in the manner you've experienced.
Any autoimmune condition can infiltrate the nervous system, but usually they would have already gotten a stronghold on other systems in your body before moving to this. Lupus and Sjögren's are two examples that would do this.
There are a variety of causes for peripheral neuropathology. It is a "result" more than a specific disease. Its a sign of underlying cause. Other causes can be a virus ( herpes which causes chicken pox/shingles/mononucleosis probably gets top billing) and of course, the nefarious lyme disease.
Remember how Laurel and I felt like the changes you and others had seen with the shape of your nose is so very significant? Well that is an autoimmune condition.
Metabolic might be referring to a disease such as diabetes, that certainly could cause some of your symptoms, however it has so many other ones, and is easily detected, so I'm sure its been ruled out. but that is an example of this type of cause.
ALS does not fit into any of the 3 categories. Its motor neuron, which falls under the umbrella of neuromuscular diseases. EVen though MG is a neuromuscular disease, and also autoimmune, its my understanding that it is not considered to be motor neuron.
Keep in mind this is just how it was explained to me, someone like Wright or Zen Archer could do better.
I'm still voting for you having autoimmune cause. But a virus could have done it.
What about toxins? Did the doctor bring up heavy metal at all? Has a 24 hour urine collection for heavy metal been done already?
hope this helps a bit. Try to be encouraged, its a process, but at least you've begun the process.
take care, :)
I finally have a little more time now that work is done, and the kids are in bed.
For the most part I felt like the trip was helpful, however there were some things I felt frustrated that they didn’t probe, and I have some questions about the direction Dr. Singleton recommended taking.
The neurological exam was pretty straightforward. No abnormal reflexes (though they did not test for a couple I thought they would like jaw jerk), and no impaired motor skills. No clinical weakness, though strength is so relative. Like most dad’s, at my best I could lift my oldest over my head, moved the washer and dryer into their nook by myself, and took the scouts on a 50 miler. Even on a bad day I think I can resist the petite twenty something resident trying to push my foot in a direction I don’t want it to go.
The doctor did probe more by asking me how I felt in terms of my maximum strength, and how long it took me to recover after exerting myself. He did not seem to do anything other than note the sensory symptoms, and anything related to swallowing (this was the part I found frustrating). In fact he said he was not sure how the swallowing fit in. What he said was most important was finding out the type of cause to formulate treatment options. Though I was frustrated, it did make sense to me.
Here is where he began speaking in terms that are a little different from what I am accustomed to (And if I was one of his medical students I would have been furiously taking notes with an outline labeled “A, B, C…”). He said that as far as muscle fatigue, weakness, and cramping goes there are basically three types of causes: autoimmune, metabolic, and inflammatory. I guess this is where my first set of questions comes in, and I’m probably appealing to someone with medical experience, or who has done a fair amount of research.
1. Does this framework contemplate ALS? I ask because the dr. was not really worried about ALS, and I was wondering which box he would put it in, or if it goes in a different box altogether.
2. If it does, which of the three types of causes would ALS fit into? I have heard thought that it might be autoimmune, though this seems to be more of a working hypothesis for a branch of research. The way I understand metabolism is that it deals with the release of energy on the cellular level. I ask this question because the dr. felt that the testing done before the U of U ruled out autoimmune causes (which is interesting because up until my consult, both my PCP and my local neuro mentioned it as a possibility). He also felt the EMG pointed away from metabolic causes, though he wanted to perform the biopsy to be sure.
3. Where does CIDP, peripheral neuropathy, and MG fit in this model? These have all been possibilities for me at some point, and I wanted to how the testing done so far fit in.
In the end Dr. Singleton felt that the best next steps were to perform a muscle biopsy (to rule out metabolic causes), and to have me see a rheumatologist. He reason was that he felt that my issues were likely to be related to an inflammatory cause. So I guess this is where my next set of questions comes in for those who have been referred to a rheumatologist as well as part of diagnosing their particular illness:
A. What types of inflammatory diseases are there that your rheum was looking for? I guess this is where I really get lost because I thought that rheumatologists dealt with connective tissue and immunology. Apparently, like in the case of CIDP, you can have inflammatory issues with the peripheral and central nervous system as well. Plus I thought that something like CIPD was considered to be both inflammatory and immune system related.
B. Do inflammatory diseases present with sensory symptoms like tingling and vibration? Gosh I hate to throw this in there, but what about twitching and fasciculation? (Laurel has already mentioned previously that CIDP is one that does).
If any can help me get this sorted out I would appreciate it.
Sorry for the long post. It just seems to be a crossroads moment for me right now, and we all know that unless you are actively involved in your health care you can twist in the wind for a long time.
Robert
Hi Robert, I understand your frustration at not having more answers or a better understanding of what you did learn.
Here's my take on some of your questions. I have absolutely no medical background, but have had the experience of my doctors originally exploring auto-immune causes in depth.
Autoimmune = inflammatory (this is important)
autoimmune = rheumatic (they're used somewhat interchangeable although I don't think they have precisely the same meaning)
CIDP and MG are autoimmune. They could present in the manner you've experienced.
Any autoimmune condition can infiltrate the nervous system, but usually they would have already gotten a stronghold on other systems in your body before moving to this. Lupus and Sjögren's are two examples that would do this.
There are a variety of causes for peripheral neuropathology. It is a "result" more than a specific disease. Its a sign of underlying cause. Other causes can be a virus ( herpes which causes chicken pox/shingles/mononucleosis probably gets top billing) and of course, the nefarious lyme disease.
Remember how Laurel and I felt like the changes you and others had seen with the shape of your nose is so very significant? Well that is an autoimmune condition.
Metabolic might be referring to a disease such as diabetes, that certainly could cause some of your symptoms, however it has so many other ones, and is easily detected, so I'm sure its been ruled out. but that is an example of this type of cause.
ALS does not fit into any of the 3 categories. Its motor neuron, which falls under the umbrella of neuromuscular diseases. EVen though MG is a neuromuscular disease, and also autoimmune, its my understanding that it is not considered to be motor neuron.
Keep in mind this is just how it was explained to me, someone like Wright or Zen Archer could do better.
I'm still voting for you having autoimmune cause. But a virus could have done it.
What about toxins? Did the doctor bring up heavy metal at all? Has a 24 hour urine collection for heavy metal been done already?
hope this helps a bit. Try to be encouraged, its a process, but at least you've begun the process.
take care, :)
planningguy
08-29-2008, 05:02 PM
CindyM- Yeah, I want to see those great grandkids too. We have had a couple of 100+'s in the family, and I'd love to join the club (Great grandma even chewed until she was 96 and won a health lottery I would never gamble in. But hey she was a west Texas matriarch, and you have to be strong to even drink the water out there.)
Rose - To me, the autoimmune scenario looks probable. Especially, given that I have pernicious anemia that seems to run with other autoimmune conditions. I was just hoping to hear from one of our research minds (Wright? Zenarcher?) on the ALS as autoimmune hypothesis, as well as the interaction of inflammatory disease and the peripheral and central nervous system. I was also wondering why Dr. Singleton separated inflammatory from autoimmune, and felt that an autoimmune cause had likely been ruled out.
The dr. recommended that I try an experiment with ibuprofen to test the inflammatory idea. He suggested 400mg three times a day for two weeks (he said that it could take a week or so to notice the difference). It seems like a simple cheap experiment, and I have been trying it since Tuesday. So far I have noticed no change whatsoever with the sensory symptoms, cramps, or muscle twitching. However, my tongue does seem a lot more manageable, and swallowing seems a bit easier. If only it could be take two and call me in the morning... :-D
Robert
Rose - To me, the autoimmune scenario looks probable. Especially, given that I have pernicious anemia that seems to run with other autoimmune conditions. I was just hoping to hear from one of our research minds (Wright? Zenarcher?) on the ALS as autoimmune hypothesis, as well as the interaction of inflammatory disease and the peripheral and central nervous system. I was also wondering why Dr. Singleton separated inflammatory from autoimmune, and felt that an autoimmune cause had likely been ruled out.
The dr. recommended that I try an experiment with ibuprofen to test the inflammatory idea. He suggested 400mg three times a day for two weeks (he said that it could take a week or so to notice the difference). It seems like a simple cheap experiment, and I have been trying it since Tuesday. So far I have noticed no change whatsoever with the sensory symptoms, cramps, or muscle twitching. However, my tongue does seem a lot more manageable, and swallowing seems a bit easier. If only it could be take two and call me in the morning... :-D
Robert
crystalkk
08-29-2008, 06:05 PM
Robert,
I happy that they are not even thinking ALS.
If you go to the MDA website and look at a list of their diseases. Under METABOLIC DISEASES OF MUSCLE
I believe this is what your dr is referring to as metobolic, you can only detect most of them in a muscle biopsy.
Hang in there,
I happy that they are not even thinking ALS.
If you go to the MDA website and look at a list of their diseases. Under METABOLIC DISEASES OF MUSCLE
I believe this is what your dr is referring to as metobolic, you can only detect most of them in a muscle biopsy.
Hang in there,
olly
08-29-2008, 06:36 PM
sorry for my late arrival on your thread.
good to hear your emg was ok.
i was thinking some neurological illnesses are a mix.
take ms,it autoimmune and inflamitory.
from what i have read about cipd it is a peripheral version of ms, which ms effects cns.
i was sent to a rehumatologist first when i started with the muscle spasm's.
then developed other neurological symptoms like foot drop,so was sent to a neuro.
all my rehumo tests ruled out inflamitory or autoimmune.
but recently i found out about polymyelitis and inclusion body myelitis.
the inflamation process in these don't show up in inflamitory tests,they need to do a muscle biopsy which show these .
they can have some symptoms similar to mnd.
word of caution.........be carefull with the iburofen,they can cause stomach problems.
i used to be on them many years ago due to a injury of my left elbow as a child,it left my arm difformed and limited use(perminantly dislocated).
long term use of iburofen is not good,i don't take them anymore.
hope your biopsy goes well.
take good care.
caroline:-D
good to hear your emg was ok.
i was thinking some neurological illnesses are a mix.
take ms,it autoimmune and inflamitory.
from what i have read about cipd it is a peripheral version of ms, which ms effects cns.
i was sent to a rehumatologist first when i started with the muscle spasm's.
then developed other neurological symptoms like foot drop,so was sent to a neuro.
all my rehumo tests ruled out inflamitory or autoimmune.
but recently i found out about polymyelitis and inclusion body myelitis.
the inflamation process in these don't show up in inflamitory tests,they need to do a muscle biopsy which show these .
they can have some symptoms similar to mnd.
word of caution.........be carefull with the iburofen,they can cause stomach problems.
i used to be on them many years ago due to a injury of my left elbow as a child,it left my arm difformed and limited use(perminantly dislocated).
long term use of iburofen is not good,i don't take them anymore.
hope your biopsy goes well.
take good care.
caroline:-D
laurel
08-30-2008, 12:16 AM
Thank you all for the kind words and encouragement. It means so much to me to know that there are people far and near who hope and pray for the best.
I finally have a little more time now that work is done, and the kids are in bed.
For the most part I felt like the trip was helpful, however there were some things I felt frustrated that they didn’t probe, and I have some questions about the direction Dr. Singleton recommended taking.
The neurological exam was pretty straightforward. No abnormal reflexes (though they did not test for a couple I thought they would like jaw jerk), and no impaired motor skills. No clinical weakness, though strength is so relative. Like most dad’s, at my best I could lift my oldest over my head, moved the washer and dryer into their nook by myself, and took the scouts on a 50 miler. Even on a bad day I think I can resist the petite twenty something resident trying to push my foot in a direction I don’t want it to go.
The doctor did probe more by asking me how I felt in terms of my maximum strength, and how long it took me to recover after exerting myself. He did not seem to do anything other than note the sensory symptoms, and anything related to swallowing (this was the part I found frustrating). In fact he said he was not sure how the swallowing fit in. What he said was most important was finding out the type of cause to formulate treatment options. Though I was frustrated, it did make sense to me.
Here is where he began speaking in terms that are a little different from what I am accustomed to (And if I was one of his medical students I would have been furiously taking notes with an outline labeled “A, B, C…”). He said that as far as muscle fatigue, weakness, and cramping goes there are basically three types of causes: autoimmune, metabolic, and inflammatory. I guess this is where my first set of questions comes in, and I’m probably appealing to someone with medical experience, or who has done a fair amount of research.
1. Does this framework contemplate ALS? I ask because the dr. was not really worried about ALS, and I was wondering which box he would put it in, or if it goes in a different box altogether.
2. If it does, which of the three types of causes would ALS fit into? I have heard thought that it might be autoimmune, though this seems to be more of a working hypothesis for a branch of research. The way I understand metabolism is that it deals with the release of energy on the cellular level. I ask this question because the dr. felt that the testing done before the U of U ruled out autoimmune causes (which is interesting because up until my consult, both my PCP and my local neuro mentioned it as a possibility). He also felt the EMG pointed away from metabolic causes, though he wanted to perform the biopsy to be sure.
3. Where does CIDP, peripheral neuropathy, and MG fit in this model? These have all been possibilities for me at some point, and I wanted to how the testing done so far fit in.
In the end Dr. Singleton felt that the best next steps were to perform a muscle biopsy (to rule out metabolic causes), and to have me see a rheumatologist. He reason was that he felt that my issues were likely to be related to an inflammatory cause. So I guess this is where my next set of questions comes in for those who have been referred to a rheumatologist as well as part of diagnosing their particular illness:
A. What types of inflammatory diseases are there that your rheum was looking for? I guess this is where I really get lost because I thought that rheumatologists dealt with connective tissue and immunology. Apparently, like in the case of CIDP, you can have inflammatory issues with the peripheral and central nervous system as well. Plus I thought that something like CIPD was considered to be both inflammatory and immune system related.
B. Do inflammatory diseases present with sensory symptoms like tingling and vibration? Gosh I hate to throw this in there, but what about twitching and fasciculation? (Laurel has already mentioned previously that CIDP is one that does).
If any can help me get this sorted out I would appreciate it.
Sorry for the long post. It just seems to be a crossroads moment for me right now, and we all know that unless you are actively involved in your health care you can twist in the wind for a long time.
Robert
I'm glad to read what you have written since you got home. It does seem that Dr. Singleton is perhaps considering polymyositis or some sort of vasculitis. Concerning your questions, you ask where ALS fits into the framework he mentioned. Now that is a hard one. I think in essence ALS is in a category of its own since the mechanism causing death to nerve cells in ALS is unknown. But it seems that it isn't really on Dr. Singleton's differential dx. list from what you say, and that is likely due to his exam, EMG, and reports that you brought with you. So that is very good.
I am a little puzzled why he seems to have ruled out autoimmune. That doesn't fit for me. If he is looking an some sort of inflammatory thing, I think autoimmune is a frequent culprit whether it be CIDP, rheumatoid arthritis, etc. I think that inflammatory diseases do present with sensory symptoms like tingling and vibration as evidenced with CIDP patients and rheumatoid arthritis patients. I have met one polymyositis patient who was getting IVIG at the same time as my husband and I believe he had sensory symptoms. He told me it had had 3 years of going to doctors, lost muscle strength, lost quite a bit of weight, and almost couldn't work anymore before he got diagnosed. He actually had thrown in the towel over diagnosing and had done his own research on the internet and then took his conclusion into the doctor. She ran the tests and basically said "by george you're right. You have polymyositis and we're admitting you to hospital ASAP". Shakes ones faith a bit doesn't it?
We found by requesting a written copy after each specialist visit we learned 75% more than we did at the actual doctors visit. Everything they think and didn't say to you is in the written report. It can be a little galling. I remember my husband's first visit at the neuromuscular disease unit and I asked out and out about ALS and was told no. We got the report and it was one of the differential diagnoses. And then on his third visit there, the neuro. said that perhaps CIDP was moving down the list and ALS up the list. It is all so nerve wracking Robert. But make sure you ask the doctor at each visit whether you may have a copy of his/her report. They always say yes. And then on the way out tell the receptionist that the doctor okay'ed you getting the report. We have had to phone and remind them two weeks after the visit to send us a copy. Those copies are vital to have in your hands. We twisted in the wind for several years by not being pro-active and assertive. Keep us posted please. And thanks for taking the time to report back when you were likely pooped from all the traveling.
Laurel
I finally have a little more time now that work is done, and the kids are in bed.
For the most part I felt like the trip was helpful, however there were some things I felt frustrated that they didn’t probe, and I have some questions about the direction Dr. Singleton recommended taking.
The neurological exam was pretty straightforward. No abnormal reflexes (though they did not test for a couple I thought they would like jaw jerk), and no impaired motor skills. No clinical weakness, though strength is so relative. Like most dad’s, at my best I could lift my oldest over my head, moved the washer and dryer into their nook by myself, and took the scouts on a 50 miler. Even on a bad day I think I can resist the petite twenty something resident trying to push my foot in a direction I don’t want it to go.
The doctor did probe more by asking me how I felt in terms of my maximum strength, and how long it took me to recover after exerting myself. He did not seem to do anything other than note the sensory symptoms, and anything related to swallowing (this was the part I found frustrating). In fact he said he was not sure how the swallowing fit in. What he said was most important was finding out the type of cause to formulate treatment options. Though I was frustrated, it did make sense to me.
Here is where he began speaking in terms that are a little different from what I am accustomed to (And if I was one of his medical students I would have been furiously taking notes with an outline labeled “A, B, C…”). He said that as far as muscle fatigue, weakness, and cramping goes there are basically three types of causes: autoimmune, metabolic, and inflammatory. I guess this is where my first set of questions comes in, and I’m probably appealing to someone with medical experience, or who has done a fair amount of research.
1. Does this framework contemplate ALS? I ask because the dr. was not really worried about ALS, and I was wondering which box he would put it in, or if it goes in a different box altogether.
2. If it does, which of the three types of causes would ALS fit into? I have heard thought that it might be autoimmune, though this seems to be more of a working hypothesis for a branch of research. The way I understand metabolism is that it deals with the release of energy on the cellular level. I ask this question because the dr. felt that the testing done before the U of U ruled out autoimmune causes (which is interesting because up until my consult, both my PCP and my local neuro mentioned it as a possibility). He also felt the EMG pointed away from metabolic causes, though he wanted to perform the biopsy to be sure.
3. Where does CIDP, peripheral neuropathy, and MG fit in this model? These have all been possibilities for me at some point, and I wanted to how the testing done so far fit in.
In the end Dr. Singleton felt that the best next steps were to perform a muscle biopsy (to rule out metabolic causes), and to have me see a rheumatologist. He reason was that he felt that my issues were likely to be related to an inflammatory cause. So I guess this is where my next set of questions comes in for those who have been referred to a rheumatologist as well as part of diagnosing their particular illness:
A. What types of inflammatory diseases are there that your rheum was looking for? I guess this is where I really get lost because I thought that rheumatologists dealt with connective tissue and immunology. Apparently, like in the case of CIDP, you can have inflammatory issues with the peripheral and central nervous system as well. Plus I thought that something like CIPD was considered to be both inflammatory and immune system related.
B. Do inflammatory diseases present with sensory symptoms like tingling and vibration? Gosh I hate to throw this in there, but what about twitching and fasciculation? (Laurel has already mentioned previously that CIDP is one that does).
If any can help me get this sorted out I would appreciate it.
Sorry for the long post. It just seems to be a crossroads moment for me right now, and we all know that unless you are actively involved in your health care you can twist in the wind for a long time.
Robert
I'm glad to read what you have written since you got home. It does seem that Dr. Singleton is perhaps considering polymyositis or some sort of vasculitis. Concerning your questions, you ask where ALS fits into the framework he mentioned. Now that is a hard one. I think in essence ALS is in a category of its own since the mechanism causing death to nerve cells in ALS is unknown. But it seems that it isn't really on Dr. Singleton's differential dx. list from what you say, and that is likely due to his exam, EMG, and reports that you brought with you. So that is very good.
I am a little puzzled why he seems to have ruled out autoimmune. That doesn't fit for me. If he is looking an some sort of inflammatory thing, I think autoimmune is a frequent culprit whether it be CIDP, rheumatoid arthritis, etc. I think that inflammatory diseases do present with sensory symptoms like tingling and vibration as evidenced with CIDP patients and rheumatoid arthritis patients. I have met one polymyositis patient who was getting IVIG at the same time as my husband and I believe he had sensory symptoms. He told me it had had 3 years of going to doctors, lost muscle strength, lost quite a bit of weight, and almost couldn't work anymore before he got diagnosed. He actually had thrown in the towel over diagnosing and had done his own research on the internet and then took his conclusion into the doctor. She ran the tests and basically said "by george you're right. You have polymyositis and we're admitting you to hospital ASAP". Shakes ones faith a bit doesn't it?
We found by requesting a written copy after each specialist visit we learned 75% more than we did at the actual doctors visit. Everything they think and didn't say to you is in the written report. It can be a little galling. I remember my husband's first visit at the neuromuscular disease unit and I asked out and out about ALS and was told no. We got the report and it was one of the differential diagnoses. And then on his third visit there, the neuro. said that perhaps CIDP was moving down the list and ALS up the list. It is all so nerve wracking Robert. But make sure you ask the doctor at each visit whether you may have a copy of his/her report. They always say yes. And then on the way out tell the receptionist that the doctor okay'ed you getting the report. We have had to phone and remind them two weeks after the visit to send us a copy. Those copies are vital to have in your hands. We twisted in the wind for several years by not being pro-active and assertive. Keep us posted please. And thanks for taking the time to report back when you were likely pooped from all the traveling.
Laurel
rose
08-30-2008, 12:56 AM
Hi Robert, I kept thinking about your earlier post, and just turned the computer back on to re-read it. I see that Laurel has posted now as well. I just don't get why this doctor separated inflammatory from autoimmune. Autoimmune is inflammatory, although maybe it is because inflammation can come from other sources as well. (?) It is strange to me, and I did not get the impression that you'd had that much rheumatic screening or testing done. It takes a LOT to rule autoimmune out as a possible cause (speaking from experience!)
Its just wonderful news that ALS isn't even in his list of considerations, and has already started a treatment experiment with the ibuprofen, although I wouldn't stake that much hope on just this one medication alone.
Laurel gave you good advise about getting a written report from you visit (and all appointments). I always get one after a visit at Hopkins, and it is clarifying to read what she has written for the other doctors.
Are you being referred to a rheumatologist at the university? It seems you may have said your home town does not have many that practice in this field, and its super important you go to one that will listen to you, and has the willingness to pursue that avenue with some energy.
Its just wonderful news that ALS isn't even in his list of considerations, and has already started a treatment experiment with the ibuprofen, although I wouldn't stake that much hope on just this one medication alone.
Laurel gave you good advise about getting a written report from you visit (and all appointments). I always get one after a visit at Hopkins, and it is clarifying to read what she has written for the other doctors.
Are you being referred to a rheumatologist at the university? It seems you may have said your home town does not have many that practice in this field, and its super important you go to one that will listen to you, and has the willingness to pursue that avenue with some energy.
planningguy
08-30-2008, 01:45 AM
Crystalkk - Thank you for the link. I will read the information for more background. It seems like many of the metabolic diseases are genetic or have a genetic predisposition.
Olly - Thank you for the background and filling in from your personal experience. I know what you're saying about ibuprofen. I take Nexium for reflux, and every doctor I talked to asked me if I was a regular ibuprofen user, then chastised me when they found out I was using it on a regular basis for headache. After my endoscopy I stopped using it altogether unless I got a show stopping, brain pounding, headache at work.
When the specialist at the U of U first asked me about ibuprofen, I thought I was going to get the typical lecture about burning a hole in my stomach. That's when he asked me to try the experiment making sure I took it with food or milk.
Laurel - Hearing you mention that the inflammatory diseases can present with sensory symptoms is very reassuring to me. The whole time Dr. Singleton was mentioning it I was wondering, "But can that make my leg feel like a phone is ringing inside it."
I know what you mean about medical records. Reading through mine in preparation for the trip was a real eye opener. It is really amazing what you take away from the consultation compared to what the Dr. takes away. It also showed me how much the Dr.'s what they thought was relevant, or chose to ignore.
Rose - I am going to give the rheumatologist my local neuro picked out a shot. Unlike the U of U consult for the NMD clinic, I think I'm going to have to at least go through the motions of giving an "on network" rheum a chance before my insurance will let me go running back to Utah (follow-ups with neurology shouldn't be a problem though). Based on what everyone is saying I'm going to read through Dr. Singleton's detailed notes when I get them. Both my wife and I heard that autoimmune was out, but everyone else I talk to (including my local dr's) seem to think that ruling it out is premature.
Thanks again for all the feedback. You all are wonderful.
Robert
Olly - Thank you for the background and filling in from your personal experience. I know what you're saying about ibuprofen. I take Nexium for reflux, and every doctor I talked to asked me if I was a regular ibuprofen user, then chastised me when they found out I was using it on a regular basis for headache. After my endoscopy I stopped using it altogether unless I got a show stopping, brain pounding, headache at work.
When the specialist at the U of U first asked me about ibuprofen, I thought I was going to get the typical lecture about burning a hole in my stomach. That's when he asked me to try the experiment making sure I took it with food or milk.
Laurel - Hearing you mention that the inflammatory diseases can present with sensory symptoms is very reassuring to me. The whole time Dr. Singleton was mentioning it I was wondering, "But can that make my leg feel like a phone is ringing inside it."
I know what you mean about medical records. Reading through mine in preparation for the trip was a real eye opener. It is really amazing what you take away from the consultation compared to what the Dr. takes away. It also showed me how much the Dr.'s what they thought was relevant, or chose to ignore.
Rose - I am going to give the rheumatologist my local neuro picked out a shot. Unlike the U of U consult for the NMD clinic, I think I'm going to have to at least go through the motions of giving an "on network" rheum a chance before my insurance will let me go running back to Utah (follow-ups with neurology shouldn't be a problem though). Based on what everyone is saying I'm going to read through Dr. Singleton's detailed notes when I get them. Both my wife and I heard that autoimmune was out, but everyone else I talk to (including my local dr's) seem to think that ruling it out is premature.
Thanks again for all the feedback. You all are wonderful.
Robert
crystalkk
08-30-2008, 09:00 AM
Robert,
Sometimes they can be sporadiac. I just seen a case on medical mystrey of someone having one of them and no one in the family had it. And also genetics has to start somewhere.
I also agree with the polymyositis, it is a inflammatory muscle disease and can cause swallowing problems, along with pain and cramps muscle fatique.
Sometimes they can be sporadiac. I just seen a case on medical mystrey of someone having one of them and no one in the family had it. And also genetics has to start somewhere.
I also agree with the polymyositis, it is a inflammatory muscle disease and can cause swallowing problems, along with pain and cramps muscle fatique.
rose
08-30-2008, 10:00 AM
I'm glad that Crystal and Laurel brought up the polymyositis, I'd meant to mention it too. About the ibuprofen. Originally, when first seeing the rheumatologist, as a first step in treatment instead of the ibuprofen he gave me a scrip for Mobic. It is only taken once a day, so with a prescription insurance plan should cost you a lot less, and I believe it is safer for your stomach. You might ask your primary care doc about it, especially if you already have reflux. also, taking prilosec otc for the two weeks that you're on the ibuprofen would give you protection....
awieleba
08-30-2008, 10:50 AM
HI RObert,
I posted on my own thread and you may want to read. I got alot of what you get. That is may be autoimmune or this or that. To go see a rheumy and I did.
I can tell you what my neuro told me that all those disease you mention would show on a emg and/or biopsy. I think that biopsy would be good. Make sure they get a good size piece, mine was and it was from leg and I was down for a few days.
my biopsy was not conclusive for any of those or for als. My emg was clean. I dont really know anymore.
Good luck,
april
I posted on my own thread and you may want to read. I got alot of what you get. That is may be autoimmune or this or that. To go see a rheumy and I did.
I can tell you what my neuro told me that all those disease you mention would show on a emg and/or biopsy. I think that biopsy would be good. Make sure they get a good size piece, mine was and it was from leg and I was down for a few days.
my biopsy was not conclusive for any of those or for als. My emg was clean. I dont really know anymore.
Good luck,
april
planningguy
08-31-2008, 12:39 AM
I will have to look into alternative anti-inflammatory meds. Thank you for the suggestion.
April, I read your update, and posted a little more there. I hope you can feel the outpouring of concern for you. I know its not easy to wrestle with illness that seems to impact every element of daily life. I am looking at having a friend perform the biopsy, and am finding some comfort in that.
Robert
April, I read your update, and posted a little more there. I hope you can feel the outpouring of concern for you. I know its not easy to wrestle with illness that seems to impact every element of daily life. I am looking at having a friend perform the biopsy, and am finding some comfort in that.
Robert
rose
08-31-2008, 11:48 PM
I will have to look into alternative anti-inflammatory meds. Thank you for the suggestion.
Robert
Yeah, or just take the prilosec. I honestly feel that ibuprofen is more effective than the Mobic, (just gaging by my general aches and pains) you really should protect your stomach though, and I'm surprised that the neuro didn't advise you about that during your appointment.
Here's to the hope that you're going to have some improvement to report, very soon!!!!:)
Robert
Yeah, or just take the prilosec. I honestly feel that ibuprofen is more effective than the Mobic, (just gaging by my general aches and pains) you really should protect your stomach though, and I'm surprised that the neuro didn't advise you about that during your appointment.
Here's to the hope that you're going to have some improvement to report, very soon!!!!:)
planningguy
09-02-2008, 08:05 PM
Quick update,
SO I have been taking 400mg of ibuprofen every 4 hours for about a week now. I guess the results have been mixed :neutral:. I feels like it has made controlling my tongue a lot easier (it doesn't feel so enlarged and stiff), and I seem to swallow a little better too. My general energy level has been a little better, but I have been away from work for a good portion of the experiment. I've had a lot less overall soreness.
What hasn't changed is the tw*****ng, and sensory symptoms. I still can get the occasional stiff sore spot, it still feels like stuff is moving in my legs, and I still have the sensory symptoms.
I am working to set up the muscle biopsy. Labor day weekend didn't do much for speeding that up. I did get to spend the weekend hunting all over Northern Wyoming and Southern Montanna looking for little girls size 9 ballet shoes. Yes she does look adorable, and yes I'll have to post pictures when I can.
Robert
PS I have a kind of geeky question to ask. I've seriously been thinking of setting up a matrix to help me keep track of dx options, and make sure I'm asking the doctors the right things. I can be a little type A when I do something like that, and I just wanted to make sure I wasn't going to far overboard. It's not the sort of thing I think I'd ever show to a doc because I would be afraid it would scream hypochondriac .
SO I have been taking 400mg of ibuprofen every 4 hours for about a week now. I guess the results have been mixed :neutral:. I feels like it has made controlling my tongue a lot easier (it doesn't feel so enlarged and stiff), and I seem to swallow a little better too. My general energy level has been a little better, but I have been away from work for a good portion of the experiment. I've had a lot less overall soreness.
What hasn't changed is the tw*****ng, and sensory symptoms. I still can get the occasional stiff sore spot, it still feels like stuff is moving in my legs, and I still have the sensory symptoms.
I am working to set up the muscle biopsy. Labor day weekend didn't do much for speeding that up. I did get to spend the weekend hunting all over Northern Wyoming and Southern Montanna looking for little girls size 9 ballet shoes. Yes she does look adorable, and yes I'll have to post pictures when I can.
Robert
PS I have a kind of geeky question to ask. I've seriously been thinking of setting up a matrix to help me keep track of dx options, and make sure I'm asking the doctors the right things. I can be a little type A when I do something like that, and I just wanted to make sure I wasn't going to far overboard. It's not the sort of thing I think I'd ever show to a doc because I would be afraid it would scream hypochondriac .
awieleba
09-02-2008, 08:28 PM
YOu are right, dont show it to the docters!!! but keep for yourself. After the last appt and how upset I felt with the doc, my husband said 'lets take photos of your area's that you are concerned about and we can monitor it', that was a good idea.
Anyway, When I have taken motrin like that, it helped with my throat issue also. I had alot of throat issue's and I just remebered that I went to the ER thinking that my throat was gonna close up and the ER doc (who happens to live on my street and I was horrifed to run into him) said I had pharyngitis (sp) and gave me motrin and it worked!
Who knows with all this! I have that with my legs at night or in the am, i do have during the day but I do not notice it, maybe it there. I am now rubbing my feet together like a cricket when I wake up and it is driving my hubby crazy! I have never done this before! My friend said that she has RLS and takes medicine for it and it works. At night her legs would jerk and move but not the rest of her body, just legs. (darn) and the medicine works.
Ok, what else do you have a spead sheet of????? JK< I think that it is great to be orderly, my husband and I both lack in this area.
Anyway, When I have taken motrin like that, it helped with my throat issue also. I had alot of throat issue's and I just remebered that I went to the ER thinking that my throat was gonna close up and the ER doc (who happens to live on my street and I was horrifed to run into him) said I had pharyngitis (sp) and gave me motrin and it worked!
Who knows with all this! I have that with my legs at night or in the am, i do have during the day but I do not notice it, maybe it there. I am now rubbing my feet together like a cricket when I wake up and it is driving my hubby crazy! I have never done this before! My friend said that she has RLS and takes medicine for it and it works. At night her legs would jerk and move but not the rest of her body, just legs. (darn) and the medicine works.
Ok, what else do you have a spead sheet of????? JK< I think that it is great to be orderly, my husband and I both lack in this area.
CB1977
09-02-2008, 08:30 PM
Hey Robert- Just wanted to say hello and that I have been following your situatiuon. I am glad that they are not thinking ALS.
CB from Ohio
CB from Ohio
lydia
09-02-2008, 08:33 PM
Robert (aka planning guy)
A matrix is perfect, and in fact I have been thinking the same thing as I obsess on differential of MND vs PD . I can see it conceptually, list of symptoms across the top row, list of possible diagnoses down the first column, grayed out boxes in cells to indicate to user that symptom doesn't go with that particular diagnosis, perhaps a particular color in a cell if it is bizarre, seemingly belonging to no diagnoses for the time being, etc...I NEED one myself, but don't have the (cognitive) energy to create one. I just can not fill in the details. Every differential "list" I stumble across is linear, how can that possibly be helpful as a representation? At least 2-D is needed. Please please share if you work on one...
NOT Geeky. Smart! Not hypochondriac, but organized, logical! I may have missed it in previous posting, but are you in the natural sciences? I mean really, the vocab "matrix" suggests it (NOT just a movie!!)
Lydia
A matrix is perfect, and in fact I have been thinking the same thing as I obsess on differential of MND vs PD . I can see it conceptually, list of symptoms across the top row, list of possible diagnoses down the first column, grayed out boxes in cells to indicate to user that symptom doesn't go with that particular diagnosis, perhaps a particular color in a cell if it is bizarre, seemingly belonging to no diagnoses for the time being, etc...I NEED one myself, but don't have the (cognitive) energy to create one. I just can not fill in the details. Every differential "list" I stumble across is linear, how can that possibly be helpful as a representation? At least 2-D is needed. Please please share if you work on one...
NOT Geeky. Smart! Not hypochondriac, but organized, logical! I may have missed it in previous posting, but are you in the natural sciences? I mean really, the vocab "matrix" suggests it (NOT just a movie!!)
Lydia
rose
09-02-2008, 09:02 PM
Robert, when I read what you wrote, I was so encouraged for you!!!! Back when I was trying the anti-inflammatory experiment, my doctors wanted to see an improvement "somewhere" not meaning everywhere, or of all symptoms. This is a very good thing. You made my evening by posting this.
... so.... did you find the ballet slippers? And you're right, you'd better post the pictures! :)
... so.... did you find the ballet slippers? And you're right, you'd better post the pictures! :)
awieleba
09-02-2008, 09:09 PM
Have you heard the song 'cinderella' by Steven Curtis Chappman? I loooove that song! It brings tears to my eyes when I think about Grace dancing with her daddy!
mtngirl
09-02-2008, 10:02 PM
Hi all. I would love to see a matrix of possible diagnosis. And yes, let's not show our doctors because they will think we're wacked but they are not living in our messed up bodies.
I have been looking more into MS because I have had two clean EMG's at this point and both were clean. My grandmother had MG and my grandfather had MS (different sides of the family). Obviously, autoimmune runs in the family...I also have psoriasis.
It looks from the online research I've done that some people with MS twitch. Does anyone know anything about this? I had a clean MRI when this all started and I twitch which I think points away from MS. Any thoughts?
I think you are all so bright and helpful...you rock!
April, I know how frustrated you must feel not getting a diagnosis (I can totally relate) but I'm so happy to hear that your latest doesn't point to ALS.
Tracy
I have been looking more into MS because I have had two clean EMG's at this point and both were clean. My grandmother had MG and my grandfather had MS (different sides of the family). Obviously, autoimmune runs in the family...I also have psoriasis.
It looks from the online research I've done that some people with MS twitch. Does anyone know anything about this? I had a clean MRI when this all started and I twitch which I think points away from MS. Any thoughts?
I think you are all so bright and helpful...you rock!
April, I know how frustrated you must feel not getting a diagnosis (I can totally relate) but I'm so happy to hear that your latest doesn't point to ALS.
Tracy
awieleba
09-03-2008, 08:34 AM
Hi Mtn~
just a thought, you mentioned that you have psoriasis. Have you heard of PSA? It is a form of arthritis in the HLA-b27 family. I tested + for this gene (only 8% of people do). It can cause Ankloysing spondylitis, reactive arthritis, psoriasis arthritis, and something else. A good friend of mine has psoriasis and after her baby got reacitve arthritis. I am sure twtiching is not a sign for it but it could be a cross over thing. It can give you alot of aches and pains. Ask to be tested. IT is more prominent in scandiavian decent (wich I am) but you never know. I think I had a form of reacitive arthritis after the baby, the GP did dx with me for a while.
anyway just a thought!
just a thought, you mentioned that you have psoriasis. Have you heard of PSA? It is a form of arthritis in the HLA-b27 family. I tested + for this gene (only 8% of people do). It can cause Ankloysing spondylitis, reactive arthritis, psoriasis arthritis, and something else. A good friend of mine has psoriasis and after her baby got reacitve arthritis. I am sure twtiching is not a sign for it but it could be a cross over thing. It can give you alot of aches and pains. Ask to be tested. IT is more prominent in scandiavian decent (wich I am) but you never know. I think I had a form of reacitive arthritis after the baby, the GP did dx with me for a while.
anyway just a thought!
planningguy
09-03-2008, 08:29 PM
Kate's class is on Thurs. I'll have to pack along the Rebel, and make sure to to get some good shots.
I think I will take a stab at the matrix. I hope people don't misunderstand what I am trying to do. I mainly intend it to be something to help me in my dx and treatment process. Part of my frustration is that I want to have a more collaborative experience with my doctors, rather than the typical dialogue of "What about x symptom?" and the response being "I don't think that's related," or "I don't know what's causing that." I would consider sharing it on a one on one basis, but I just didn't want anyone to think I was going to throw it out there when I was done.
I think a lot of us go in and try to emphasize one symptom or another, hope the doctor will connect the dots of our mental map, and are disappointed when they don't. I want a clearer idea because I would prefer to get an answer of "I don't think it's NMD for the following reasons...," or "That can happen in MS, but it is very uncommon, the most common signs which you don't have are..." Perhaps it will prompt them to look at something they hadn't considered. Laurel, I keep thinking of your example of the young man who guided his doctor to the right fork in the road. There might even be the possibility of, "Well heck it is <insert extremely rare but mostly benign condition>, you just need to stop wearing synthetic blends."
Lydia to answer your question, I have a social science background (masters degrees in sociology and regional planning). The committee chair for my sociology masters had an interest in community health, and the impact of lifestyle on self-rated health outcomes. Consequently, my thesis was on the impact of certain lifestyle factors on male self-rated health (the universe, it would seem, is not without a sense of irony). In my present job I work a lot with engineers who tend to make matrixes, process diagrams and critical paths. It rubs off, and I occasionally find myself with a pencil and a couple of pens of a different color in my pocket.
CB1977... Thank you and everyone for your support and kindness. I think the power of this forum comes from the compassion and hope that everyone has for each other, whether they choose to post or not.
Robert
I think I will take a stab at the matrix. I hope people don't misunderstand what I am trying to do. I mainly intend it to be something to help me in my dx and treatment process. Part of my frustration is that I want to have a more collaborative experience with my doctors, rather than the typical dialogue of "What about x symptom?" and the response being "I don't think that's related," or "I don't know what's causing that." I would consider sharing it on a one on one basis, but I just didn't want anyone to think I was going to throw it out there when I was done.
I think a lot of us go in and try to emphasize one symptom or another, hope the doctor will connect the dots of our mental map, and are disappointed when they don't. I want a clearer idea because I would prefer to get an answer of "I don't think it's NMD for the following reasons...," or "That can happen in MS, but it is very uncommon, the most common signs which you don't have are..." Perhaps it will prompt them to look at something they hadn't considered. Laurel, I keep thinking of your example of the young man who guided his doctor to the right fork in the road. There might even be the possibility of, "Well heck it is <insert extremely rare but mostly benign condition>, you just need to stop wearing synthetic blends."
Lydia to answer your question, I have a social science background (masters degrees in sociology and regional planning). The committee chair for my sociology masters had an interest in community health, and the impact of lifestyle on self-rated health outcomes. Consequently, my thesis was on the impact of certain lifestyle factors on male self-rated health (the universe, it would seem, is not without a sense of irony). In my present job I work a lot with engineers who tend to make matrixes, process diagrams and critical paths. It rubs off, and I occasionally find myself with a pencil and a couple of pens of a different color in my pocket.
CB1977... Thank you and everyone for your support and kindness. I think the power of this forum comes from the compassion and hope that everyone has for each other, whether they choose to post or not.
Robert
planningguy
09-03-2008, 08:46 PM
The other reason not to dissemenate the matrix is that if any of you have had the misfortune of using a "diagnosis" website, you know those things can grow hundreds of extra heads, and have zero utility. Everybody repeat after me, "The web cannot replace clinical diagnosis. The web cannot replace clinical diagnosis...) Good grief thinking of the database behind one of those panic inducers gives me cold sweat flashbacks to population model spreadsheets in gradschool ("I think your error is in cell AB73, that's what's causing the 76,000% increase in the growth rate of the 10-14 year old cohort." OK now that was a geeky joke ;) )
I would be very narrowly focused on candidates I have either heard my doctor mention, or were the product of personal research and recommendations pertaining to my specific experience.
Robert
I would be very narrowly focused on candidates I have either heard my doctor mention, or were the product of personal research and recommendations pertaining to my specific experience.
Robert
lydia
09-03-2008, 09:20 PM
Hi Robert and others,
Of course the matrix has to be individualized for each person (right??? it's not always the same rule-out process for everyone, is it?); my differential is very different than your differential and others here. Until I hear otherwise (and let's hope I do!) I need to compare MND to PD. (I wonder...anyone else here with that particular pairwise comparison?). I am energized though, about the possibility of organizing the info I am learning about into something useable-right now it is a big jumble; inaccessible. I can see it being a valuable tool at doctor visits...if only I had the where-with-all to actually complete it.
So this is my question-I see the matrix as individualized, based on doctor intuition, speculation, educated guesses, interpretation of symptoms/signs/tests, etc. BUT at the same time, it seems like many end up at the Rheumatologist (sp?). Is there something that pops up that prompts your doctor to refer you to the Rheumy, or is it more that your doctor wants to leave no stone unturned even if symptoms/tests/signs don't necessarily warrant it? Just to make absolutely sure, either way? My impression is that there won't be definitive answers until that doctor is met with ...I really don't know how to say what I am thinking, still working it out. Thanks all for paying attention.
Lydia
Of course the matrix has to be individualized for each person (right??? it's not always the same rule-out process for everyone, is it?); my differential is very different than your differential and others here. Until I hear otherwise (and let's hope I do!) I need to compare MND to PD. (I wonder...anyone else here with that particular pairwise comparison?). I am energized though, about the possibility of organizing the info I am learning about into something useable-right now it is a big jumble; inaccessible. I can see it being a valuable tool at doctor visits...if only I had the where-with-all to actually complete it.
So this is my question-I see the matrix as individualized, based on doctor intuition, speculation, educated guesses, interpretation of symptoms/signs/tests, etc. BUT at the same time, it seems like many end up at the Rheumatologist (sp?). Is there something that pops up that prompts your doctor to refer you to the Rheumy, or is it more that your doctor wants to leave no stone unturned even if symptoms/tests/signs don't necessarily warrant it? Just to make absolutely sure, either way? My impression is that there won't be definitive answers until that doctor is met with ...I really don't know how to say what I am thinking, still working it out. Thanks all for paying attention.
Lydia
mtngirl
09-03-2008, 09:39 PM
Well, here's one for the matrix. Today I made two trips to the E.R. due to shortness of breath, tightness in the chest, dizziness and a RACING heart. I was worried I was having a heart attack as I also had pain in the left side of my neck.
Long story short, I was diagnosed with paroxysmal supraventricular tachychardia (say that five times fast) and I did not have a heart attack. This is not a serious condition in and of itself but could be indicative of other things. My doc feels that the heart thing is somehow related to the fasciculations and muscle weakness. Pretty strange, eh?
Anyway, I have to have a heart scan and meet with a cardiologist next week. Maybe this will lead to some answers???? I just wanted to post this in case someone else has experienced the same thing. Of course, there is a defininte possibility that my symptoms are not related.
To think, a year ago I was working out, skiing, and feeling great. What a difference a year can make.
Thinking of you all.
Tracy
Long story short, I was diagnosed with paroxysmal supraventricular tachychardia (say that five times fast) and I did not have a heart attack. This is not a serious condition in and of itself but could be indicative of other things. My doc feels that the heart thing is somehow related to the fasciculations and muscle weakness. Pretty strange, eh?
Anyway, I have to have a heart scan and meet with a cardiologist next week. Maybe this will lead to some answers???? I just wanted to post this in case someone else has experienced the same thing. Of course, there is a defininte possibility that my symptoms are not related.
To think, a year ago I was working out, skiing, and feeling great. What a difference a year can make.
Thinking of you all.
Tracy
awieleba
09-04-2008, 08:38 AM
Mtn~
Well, maybe they will find something related to your heart, that would be good. They have come sooo far with concerns to the heart.
when I was in the hosp. the 1st time, my heart was going crazy. I would get low BP and high Bp, then my I would almost pass out. The heart would go fast and then it would drop to the low 40's and I had nonstop 'pvc's (i think that is what they called it) I had to wear a monitor (the nurses thought my heart would stop) and have ekg, echo. The cardiologist said it was my autonomical nervous system doing it. My GI was so messed up and what ever. MY point is your autonomical nervous system can effect your heart and why not your muscle's?
I looove skiing! IT is not as good out here but we have a few good area's. I will not be doing it this year but my cant wait to see my son. THis would be his 2 yr and he is still learning at 7.
Take care,
april
Well, maybe they will find something related to your heart, that would be good. They have come sooo far with concerns to the heart.
when I was in the hosp. the 1st time, my heart was going crazy. I would get low BP and high Bp, then my I would almost pass out. The heart would go fast and then it would drop to the low 40's and I had nonstop 'pvc's (i think that is what they called it) I had to wear a monitor (the nurses thought my heart would stop) and have ekg, echo. The cardiologist said it was my autonomical nervous system doing it. My GI was so messed up and what ever. MY point is your autonomical nervous system can effect your heart and why not your muscle's?
I looove skiing! IT is not as good out here but we have a few good area's. I will not be doing it this year but my cant wait to see my son. THis would be his 2 yr and he is still learning at 7.
Take care,
april
rose
09-04-2008, 08:48 AM
Mtn~
MY point is your autonomical nervous system can effect your heart and why not your muscle's?
Take care,
april
The peripheral nervous system is subdivided into the sensory-somatic nervous system and the autonomic nervous system ....
Mtngirl, I hope you have a better day today (it shouldn't take much!!!!) :)
MY point is your autonomical nervous system can effect your heart and why not your muscle's?
Take care,
april
The peripheral nervous system is subdivided into the sensory-somatic nervous system and the autonomic nervous system ....
Mtngirl, I hope you have a better day today (it shouldn't take much!!!!) :)
awieleba
09-04-2008, 08:53 AM
Ok Rose, I dont know what that means ?!?!? Does it mean that it is connected?
Your such a smarty pants, If it does not cry, poop, scream, slam the door, or have to do with star wars....then I just dont know anymore. My brain is turning into baby/kid mush,.............
Your such a smarty pants, If it does not cry, poop, scream, slam the door, or have to do with star wars....then I just dont know anymore. My brain is turning into baby/kid mush,.............
rose
09-04-2008, 09:49 AM
Ok Rose, I dont know what that means ?!?!? Does it mean that it is connected?
Your such a smarty pants, If it does not cry, poop, scream, slam the door, or have to do with star wars....then I just dont know anymore. My brain is turning into baby/kid mush,.............
....do you know how many years that if one dug deep enough, they'd find at least one matchbox car in my purse LOL And then as for daughters...... you just wait! LOL
A cute little "aside"... my older son that is going to soon be 32 (yikes!) was about 8 months old when the first star wars movie came out. So we took him along when we went to see it, and he was just at the age when if someone would laugh, he would laugh too. It was so adorable, he sat on my lap, and every time something funny would happen, he be laughing right along. I'll never forget that :) (he still loves Star Wars)
The autonomic nervous system has both sensory neurons and motor neurons that run between the central nervous system and various internal organs. It is part of the peripheral nervous system.
The other part of the peripheral nervous system is the sensory-somatic. These are cranial and spinal nerves.
So (from how it was explained to me) we have the CNS (central nervous system, which is our brain and spinal cord) and the peripheral nervous system. The CNS is (I think) where any upper motor neurons are. I'm not 100% certain about this, but others that do know can clarify it if I'm wrong.
Now.... I must go sit in the sun and crochet some before it gets unbearably hot :cool:
may the force be with you!!!!
Your such a smarty pants, If it does not cry, poop, scream, slam the door, or have to do with star wars....then I just dont know anymore. My brain is turning into baby/kid mush,.............
....do you know how many years that if one dug deep enough, they'd find at least one matchbox car in my purse LOL And then as for daughters...... you just wait! LOL
A cute little "aside"... my older son that is going to soon be 32 (yikes!) was about 8 months old when the first star wars movie came out. So we took him along when we went to see it, and he was just at the age when if someone would laugh, he would laugh too. It was so adorable, he sat on my lap, and every time something funny would happen, he be laughing right along. I'll never forget that :) (he still loves Star Wars)
The autonomic nervous system has both sensory neurons and motor neurons that run between the central nervous system and various internal organs. It is part of the peripheral nervous system.
The other part of the peripheral nervous system is the sensory-somatic. These are cranial and spinal nerves.
So (from how it was explained to me) we have the CNS (central nervous system, which is our brain and spinal cord) and the peripheral nervous system. The CNS is (I think) where any upper motor neurons are. I'm not 100% certain about this, but others that do know can clarify it if I'm wrong.
Now.... I must go sit in the sun and crochet some before it gets unbearably hot :cool:
may the force be with you!!!!
olly
09-04-2008, 10:45 AM
rose...........the umn's reside in the motor cortex,that is the grey matter that surrounds the outside of the brain with the white matter being inside it.
robert......great minds think alike lol.
i was thinking a few weeks ago about getting together the main symptoms,signs ect of mnd's and mimic disorders and working out a simple spread sheet/chart.
i thought it would be good for new comers to refer to.
it does not need to be tailored to each indervidual,just the main neurological signs,possible symptoms and tests.
i have saved loads of info and charts,just not had time to get round to doing it yet,maybe this weekend.
take good care.
caroline:-D
ps...........do one for your neuro.
i did a chart for three months for my neuro when i first got ill,listing each day the symptoms i had,how bad ect.
it gives them an idea how your illness effects you day to day,my neuro could see from mine how ill i had been since i last saw him.
robert......great minds think alike lol.
i was thinking a few weeks ago about getting together the main symptoms,signs ect of mnd's and mimic disorders and working out a simple spread sheet/chart.
i thought it would be good for new comers to refer to.
it does not need to be tailored to each indervidual,just the main neurological signs,possible symptoms and tests.
i have saved loads of info and charts,just not had time to get round to doing it yet,maybe this weekend.
take good care.
caroline:-D
ps...........do one for your neuro.
i did a chart for three months for my neuro when i first got ill,listing each day the symptoms i had,how bad ect.
it gives them an idea how your illness effects you day to day,my neuro could see from mine how ill i had been since i last saw him.
planningguy
09-06-2008, 11:45 AM
Sorry not to get back sooner. The end of the week ended up pretty rough after having so many "good" days. I will try to crank on the chart some this weekend. First I am generating a list symptoms, then possibilities. Will write more later.
Robert
Robert
mtngirl
09-06-2008, 11:53 AM
Hi guys.
Thanks for the good wishes Rose...I haven't had any more tachycardia which is good. I still have tightness in my chest and I feel short of breath but I've had this feeling off and on since March when the fasics started.
Anyway, obviously I'm worried about ALS or I wouldn't be here. And, I know none of us is doctors so I'm asking for opinions. Do you guys think the tachycardia could be caused by ALS...what about the tightness in chest and shortness of breath?
I have had two EMG's clean but my speech is getting worse (so frustrating) and now this problem.
I'm off to soccer games today...should be a good distraction!
Any advise is appreciated. I'm so worried about all of this. Today I just feel like crying (pitty party for me).
Tracy
P.S. April -- Even if we can't ski this year we can still watch from the lodge with a nice cocktail. Here's hoping we'll be back in the slopes in the future!
Thanks for the good wishes Rose...I haven't had any more tachycardia which is good. I still have tightness in my chest and I feel short of breath but I've had this feeling off and on since March when the fasics started.
Anyway, obviously I'm worried about ALS or I wouldn't be here. And, I know none of us is doctors so I'm asking for opinions. Do you guys think the tachycardia could be caused by ALS...what about the tightness in chest and shortness of breath?
I have had two EMG's clean but my speech is getting worse (so frustrating) and now this problem.
I'm off to soccer games today...should be a good distraction!
Any advise is appreciated. I'm so worried about all of this. Today I just feel like crying (pitty party for me).
Tracy
P.S. April -- Even if we can't ski this year we can still watch from the lodge with a nice cocktail. Here's hoping we'll be back in the slopes in the future!
BethU
09-06-2008, 03:57 PM
I haven't had any more tachycardia which is good. I still have tightness in my chest and I feel short of breath but I've had this feeling off and on since March when the fasics started.
Anyway, obviously I'm worried about ALS or I wouldn't be here. And, I know none of us is doctors so I'm asking for opinions. Do you guys think the tachycardia could be caused by ALS...what about the tightness in chest and shortness of breath?
Hi, Tracy ... It doesn't sound anything like ALS to me. And the fact that you've been referred to a cardiologist indicates that your doctors are on a completely different page.
I hope your visit to the cardiologist this week goes well, and that there is nothing wrong with your heart! It's a pretty vital organ.
BethU
Anyway, obviously I'm worried about ALS or I wouldn't be here. And, I know none of us is doctors so I'm asking for opinions. Do you guys think the tachycardia could be caused by ALS...what about the tightness in chest and shortness of breath?
Hi, Tracy ... It doesn't sound anything like ALS to me. And the fact that you've been referred to a cardiologist indicates that your doctors are on a completely different page.
I hope your visit to the cardiologist this week goes well, and that there is nothing wrong with your heart! It's a pretty vital organ.
BethU
planningguy
09-09-2008, 07:20 PM
Well I went for a physical eval today. My employer has a wellness program, and I decided that not only could I possibly get into better shape, but that I would get a nice baseline that would be followed up in six months. I warned the trainer ahead of time (their main concern in the paperwork seemed to be cardio) about the muscle fatigue.
Most of the tests seemed about right with the exception of the bench press and situps (Man have situps changed since I was a kid ;) ). I haven't worked with free weights for a while, but it was still a bit of a surprise the way I performed. I'm going to put some more time into the matrix tonight. Been busy as all get out with everyone trying to get work done before the frost hits.
For those who have been following with this one, I think I will start a new thread as I move forward. I looked at the thread title again, and I don't think it fits anymore. Yes some of my symptoms are progressing, and I've had a couple of new ones pop up. I won't lie and say that I don't get scared anymore because, like many people trying to find out what's wrong with me, I still sometimes fear the worst. I am a lot more hopeful, though, and I've learned a bit more.
Ate breve,
Robert
Most of the tests seemed about right with the exception of the bench press and situps (Man have situps changed since I was a kid ;) ). I haven't worked with free weights for a while, but it was still a bit of a surprise the way I performed. I'm going to put some more time into the matrix tonight. Been busy as all get out with everyone trying to get work done before the frost hits.
For those who have been following with this one, I think I will start a new thread as I move forward. I looked at the thread title again, and I don't think it fits anymore. Yes some of my symptoms are progressing, and I've had a couple of new ones pop up. I won't lie and say that I don't get scared anymore because, like many people trying to find out what's wrong with me, I still sometimes fear the worst. I am a lot more hopeful, though, and I've learned a bit more.
Ate breve,
Robert
rose
09-09-2008, 07:41 PM
now you're tossing in a little Portuguese, Eh? (I used to share a "crashpad" in the Portuguese section of Newark..... great food, good inexpensive wines, and, many little stores with appliances wired for non USA current LOL) ....
Glad to hear you're seeing some improvement. it is encouraging, more so and outweighs any new developments I hope. ... .. and I wasn't sure if you meant you surprised yourself in a good way with the free weights (I took it to mean that)... do you have a rheumatologist appt yet?
:)
Glad to hear you're seeing some improvement. it is encouraging, more so and outweighs any new developments I hope. ... .. and I wasn't sure if you meant you surprised yourself in a good way with the free weights (I took it to mean that)... do you have a rheumatologist appt yet?
:)
planningguy
09-10-2008, 01:36 PM
I lived in Brazil for a little while during a break in my college studies. Beautiful country, wonderful people, great food and culture.
When we lived in Albany, my wife and I used to run to a little Brazilian supermarket in Boston when we got cravings, now we just have to content ourselves with eating in a churrasco in Denver or Salt Lake :(
When we lived in Albany, my wife and I used to run to a little Brazilian supermarket in Boston when we got cravings, now we just have to content ourselves with eating in a churrasco in Denver or Salt Lake :(
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