Scared Dad... Things seem to be getting worse.
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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
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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 diagnosed 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 diagnosed with me for a while.
anyway just a thought!
planningguy
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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 diagnosed 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 diagnosed 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
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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
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matrix
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
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
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
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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
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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
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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
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....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
may the force be with you!
olly
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hi
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.
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.
planningguy
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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
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
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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
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