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planningguy
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lbeyerl,
Neither you, nor your other doctor seem overly impressed with what has been provided by your present neuro. I think your decision to see a nmd specialist is a good one, and I hope you start getting some answers (and peace of mind).
Robert
Neither you, nor your other doctor seem overly impressed with what has been provided by your present neuro. I think your decision to see a nmd specialist is a good one, and I hope you start getting some answers (and peace of mind).
Robert
lbeyerl
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Planningguy,
I agree. I have an appt scheduled and will go to that but I had a fall yesterday and it is becoming difficult for me to grip a toothbrush, pen etc.
Whatever this is it seems to be happening so fast.
My uncle works for loyola university in chicago as an administrator and is telling my parents to bring me up there so i can just check in and have some extensive testing done.
I was hoping this was all in my head but even as I type my fingers are shaking. I am so scared I am only 22 and have my whole life ahead of me, this is terrifying.
I am so grateful to have this website it helps me feel like I am not alone. Thank you everyone for your input I wish i was as brave as some of you.
I agree. I have an appt scheduled and will go to that but I had a fall yesterday and it is becoming difficult for me to grip a toothbrush, pen etc.
Whatever this is it seems to be happening so fast.
My uncle works for loyola university in chicago as an administrator and is telling my parents to bring me up there so i can just check in and have some extensive testing done.
I was hoping this was all in my head but even as I type my fingers are shaking. I am so scared I am only 22 and have my whole life ahead of me, this is terrifying.
I am so grateful to have this website it helps me feel like I am not alone. Thank you everyone for your input I wish i was as brave as some of you.
BethU
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Hi, I sending prayers your way that you will find an explanation and solution soon. I hope your parents are there with you now. You need all the support you can get.
Hang in there,
BethU
Hang in there,
BethU
planningguy
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lbeyerl,
We will keep you in our thoughts, and continue hoping for the best. Although it is scary for you keep in mind what Wright said, the rapid onset and progression point away nmd. Hopefully you can make it to the specialist or Chicago soon.
Take care,
Robert
We will keep you in our thoughts, and continue hoping for the best. Although it is scary for you keep in mind what Wright said, the rapid onset and progression point away nmd. Hopefully you can make it to the specialist or Chicago soon.
Take care,
Robert
CindyM
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I want to reassure you, too. Maybe you should get tested for Lyme disease, or even lupus. Neither one of these conditions are a walk in the park but they are much better than MND! Regards, Cindy
lbeyerl
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Thanks for the thoughts and prayers! Still waiting to hear about when we can go to chicago--uncle says should be next week. Thank God for family!
Cindy, I have been tested for Lyme and Lupus and were both negative. So that is a good thing!
Thank you for all the prayers, I am praying for all of you each day as well and know that such kind people will be rewarded in Heaven.
Cindy, I have been tested for Lyme and Lupus and were both negative. So that is a good thing!
Thank you for all the prayers, I am praying for all of you each day as well and know that such kind people will be rewarded in Heaven.
lbeyerl
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Back again! Was in today to see a neuromuscular specialist recommended by my uncles colleague at Loyola. Thought we would give it one more try before making any moves to do testing in chicago.
He did a full neurological exam on me that lasted about 30 minutes. He listened to me and asked me a lot of questions. I also gave him copies of all of my previous lab work. The doctor said that initially my exam is normal, however, when he had me do repitive motions with my arms and legs he noted significant weakness. He said this is what is termed 'fatigueability' of the muscles (spelling?). For a person of my age i should have no trouble repeating muscle movements, exercising, etc. and i do. He recommended we repeat the emg and do what he called a more extensive emg that uses repetitive stimulation to measure the rate at which your muscles weaken. He also ordered a blood test for myasthenia gravis.
I finallly feel like i am getting closer to an answer! The second EMG will be on the 20th and should have the blood results then as well will post as soon as i hear!
Trying to relax and remain calm, you can only google so much right!
Hope you are all doing well especially the PALs and caregivers. Thank you for all the support yet again!
He did a full neurological exam on me that lasted about 30 minutes. He listened to me and asked me a lot of questions. I also gave him copies of all of my previous lab work. The doctor said that initially my exam is normal, however, when he had me do repitive motions with my arms and legs he noted significant weakness. He said this is what is termed 'fatigueability' of the muscles (spelling?). For a person of my age i should have no trouble repeating muscle movements, exercising, etc. and i do. He recommended we repeat the emg and do what he called a more extensive emg that uses repetitive stimulation to measure the rate at which your muscles weaken. He also ordered a blood test for myasthenia gravis.
I finallly feel like i am getting closer to an answer! The second EMG will be on the 20th and should have the blood results then as well will post as soon as i hear!
Trying to relax and remain calm, you can only google so much right!
Hope you are all doing well especially the PALs and caregivers. Thank you for all the support yet again!
BethU
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That is great news! Thank you for letting us know what's happening. MG is a difficult disease, but it can be treated, and even reversed!
Fingers crossed for you
BethU
Fingers crossed for you
BethU
lydia
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Question for Wright
I wonder if Wright can elaborate on the extended EMG with repetitive stimulation to measure the rate at which muscles weaken. This notion of "fatiguability" (spelling?). I don't recall reading anything about that on Forum and apologize if it has been addressed.
Both my GP and neuro seemed really interested in how I feel as the day progresses, but that idea seems to have stalled. I feel mighty good in the morning, and depending on the day, can feel pretty bad within 2-3 hours or not feel bad until like 8 hours later. No matter what I WILL always feel bad later in the day. I forgot about this until your post. How do you feel first thing in the morning? Is there a noticeable difference as the day progresses?
I reread your thread and with all that suspected atrophy, you must have lost even more weight? Could it be weight loss that makes you think it is atrophy? It almost sounded like the suspected atrophy was symmetrical...making me think maybe you are losing a whole lot of weight and fast. I know atrophy can cause weight loss (muscles weigh more than fat, right?) but it is happening so fast, I wonder if it is unexplained weight loss instead...making you think it is atrophy. How much have you lost in all since your virus in the summer?
I am sure you were tested for this...but they did investigate possible diabetes? Could explain weight loss (not sure about any of the other though)
Will be following your story and wish you the best of luck-
Lydia
I wonder if Wright can elaborate on the extended EMG with repetitive stimulation to measure the rate at which muscles weaken. This notion of "fatiguability" (spelling?). I don't recall reading anything about that on Forum and apologize if it has been addressed.
Both my GP and neuro seemed really interested in how I feel as the day progresses, but that idea seems to have stalled. I feel mighty good in the morning, and depending on the day, can feel pretty bad within 2-3 hours or not feel bad until like 8 hours later. No matter what I WILL always feel bad later in the day. I forgot about this until your post. How do you feel first thing in the morning? Is there a noticeable difference as the day progresses?
I reread your thread and with all that suspected atrophy, you must have lost even more weight? Could it be weight loss that makes you think it is atrophy? It almost sounded like the suspected atrophy was symmetrical...making me think maybe you are losing a whole lot of weight and fast. I know atrophy can cause weight loss (muscles weigh more than fat, right?) but it is happening so fast, I wonder if it is unexplained weight loss instead...making you think it is atrophy. How much have you lost in all since your virus in the summer?
I am sure you were tested for this...but they did investigate possible diabetes? Could explain weight loss (not sure about any of the other though)
Will be following your story and wish you the best of luck-
Lydia
BethU
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hi, Lydia ... I'll jump in for a minute, although I'm sure that Wright will have the definitive answer.
This notion of "fatiguability" (spelling?). I don't recall reading anything about that on Forum and apologize if it has been addressed. Both my GP and neuro seemed really interested in how I feel as the day progresses, but that idea seems to have stalled. I feel mighty good in the morning
Probably the reason "fatiguability" isn't mentioned on this forum is because it is not a symptom of ALS ... but it's almost the definition of Myasthenia Gravis. People with MG generally become weaker and weaker (or more and more tired, whatever word works for you) as the day goes on.
Patients with MG cannot perform repetitive tasks ... like hammering a nail, or sawing wood, or kneading bread.. Usually, they can perform an action a few times, but it becomes harder and harder with each repetition. If they rest the muscles involved until they recover, they can again resume the action, but with the same increasing weakness, requiring rest again.
Hope this helps a little.
BethU
This notion of "fatiguability" (spelling?). I don't recall reading anything about that on Forum and apologize if it has been addressed. Both my GP and neuro seemed really interested in how I feel as the day progresses, but that idea seems to have stalled. I feel mighty good in the morning
Probably the reason "fatiguability" isn't mentioned on this forum is because it is not a symptom of ALS ... but it's almost the definition of Myasthenia Gravis. People with MG generally become weaker and weaker (or more and more tired, whatever word works for you) as the day goes on.
Patients with MG cannot perform repetitive tasks ... like hammering a nail, or sawing wood, or kneading bread.. Usually, they can perform an action a few times, but it becomes harder and harder with each repetition. If they rest the muscles involved until they recover, they can again resume the action, but with the same increasing weakness, requiring rest again.
Hope this helps a little.
BethU
rose
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lbeyerl
That is good news. I'm glad you were able to have a proper exam by a neuro that was interested in listening to you as well.
Be prepared that the MG bloodwork can take an extensive time to get results back from. You might even inquire(if blood isn't drawn yet) if the doctor's office has any suggestions as to which lab you should use, as some are slower than others for this (as in Lab Corp!)
It may take several weeks to get the results. Also, the MuSK strain of MG has a fairly high percentage rate of not showing up in the test. I'm thinking though, that the MuSK variety is more commonly seen with Bulbar presentation, whereas its more your arm/leg strength, etc, right?
Good luck! :smile:
That is good news. I'm glad you were able to have a proper exam by a neuro that was interested in listening to you as well.
Be prepared that the MG bloodwork can take an extensive time to get results back from. You might even inquire(if blood isn't drawn yet) if the doctor's office has any suggestions as to which lab you should use, as some are slower than others for this (as in Lab Corp!)
It may take several weeks to get the results. Also, the MuSK strain of MG has a fairly high percentage rate of not showing up in the test. I'm thinking though, that the MuSK variety is more commonly seen with Bulbar presentation, whereas its more your arm/leg strength, etc, right?
Good luck! :smile:
lbeyerl
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Lydia,
I believe I am probably losing weight overall and maybe just because of how thin i have become in the limbs especially have assumed it is atrophy. At least that is what i am hoping.
In all I have lost ten pounds which is a lot for me.
I do notice that I seem most weak at the end of the day, or at the end of doing something physical. If i lay down and rest for a little while I can usually resume what i was doing. For example, I have to write on a wipe board at work a lot. After doing this for a while my arms will get so tired. If i sit down for an hour and do desk work, i can usually resume writing on the board after that.
The places I notice the weight loss are in my arms near my shoulders, my calfs, feet, butt, and back. I believe Wright said that if it is in all these places that it is not typical atrophy, so most likely it is just weight loss.
I had the doctor look at these areas and he said that since he had not seen me before he could not tell if this is abnormal but the muscle in these areas "looks healthy". So I am going to hope atrophy is not the answer here as I would assume at least 1 of all these doctors would be able to recognize that. I certainly don't have experience with atrophy, so I am going to trust them on this one!
Lab work should be 1 or 2 weeks he said. And yes they are using LabCorp. I have had a lot of work done through this lab office though and they always seem to be timely!
PLUS In the doctors office I had normal reflexes, and no babinski. I think that is right because he did a thing where he used a utensil and drug it from the bottom of my heel to my toes and my big toe did not shoot up. Youtubing and Googling tell me that is normal (I promise i will stop that sooon...Lol!).
So we shall see! Hope this clarified things for you lydia!
I believe I am probably losing weight overall and maybe just because of how thin i have become in the limbs especially have assumed it is atrophy. At least that is what i am hoping.
In all I have lost ten pounds which is a lot for me.
I do notice that I seem most weak at the end of the day, or at the end of doing something physical. If i lay down and rest for a little while I can usually resume what i was doing. For example, I have to write on a wipe board at work a lot. After doing this for a while my arms will get so tired. If i sit down for an hour and do desk work, i can usually resume writing on the board after that.
The places I notice the weight loss are in my arms near my shoulders, my calfs, feet, butt, and back. I believe Wright said that if it is in all these places that it is not typical atrophy, so most likely it is just weight loss.
I had the doctor look at these areas and he said that since he had not seen me before he could not tell if this is abnormal but the muscle in these areas "looks healthy". So I am going to hope atrophy is not the answer here as I would assume at least 1 of all these doctors would be able to recognize that. I certainly don't have experience with atrophy, so I am going to trust them on this one!
Lab work should be 1 or 2 weeks he said. And yes they are using LabCorp. I have had a lot of work done through this lab office though and they always seem to be timely!
PLUS In the doctors office I had normal reflexes, and no babinski. I think that is right because he did a thing where he used a utensil and drug it from the bottom of my heel to my toes and my big toe did not shoot up. Youtubing and Googling tell me that is normal (I promise i will stop that sooon...Lol!).
So we shall see! Hope this clarified things for you lydia!
wright
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Hello again lbeyerl
Your "atrophy" all started at the same time and in many different parts of your body. That simply doesn't sound like muscle atrophy to me; it sounds like weight loss and when we lose weight., we don't always lose it evenly in our bodies. That might give you the illusion you have muscle atrophy. Physicians are trained to recognize muscle atrophy, so I would trust what he said.
The MG query is probably a good one, given how you tire and then can recuperate rather quickly. That is a symptom of MG: muscles fatigue quickly but given some time, can perform the task at hand . . . but again . . . will tire quickly.
As I have said before: your symptoms just don't sound ALS-like to me. It appears as if you are in good hands, so be cautiously optimistic you will get answers soon.
Lydia
The best way to test for MG is single-fiber EMG, which is different than the typical EMG's that people talk about on this forum (your "typical" EMG does not shed much light on an MG diagnosis). With single-fiber EMG, they pinpoint and needle an individual muscle fiber and put it through some tests to see how it behaves. Part of the protocol is to see how quickly they can fatigue the muscle fiber. Skeletal muscle fibers have a "normal" threshold for fatigue, which is dramatically decreased with MG.
MG can also be detected by looking for particular autoantibodies (MG is an autoimmune disease), although it isn't always fool-proof. Roughly 10% of cases go undetected with those blood tests.
Your "atrophy" all started at the same time and in many different parts of your body. That simply doesn't sound like muscle atrophy to me; it sounds like weight loss and when we lose weight., we don't always lose it evenly in our bodies. That might give you the illusion you have muscle atrophy. Physicians are trained to recognize muscle atrophy, so I would trust what he said.
The MG query is probably a good one, given how you tire and then can recuperate rather quickly. That is a symptom of MG: muscles fatigue quickly but given some time, can perform the task at hand . . . but again . . . will tire quickly.
As I have said before: your symptoms just don't sound ALS-like to me. It appears as if you are in good hands, so be cautiously optimistic you will get answers soon.
Lydia
The best way to test for MG is single-fiber EMG, which is different than the typical EMG's that people talk about on this forum (your "typical" EMG does not shed much light on an MG diagnosis). With single-fiber EMG, they pinpoint and needle an individual muscle fiber and put it through some tests to see how it behaves. Part of the protocol is to see how quickly they can fatigue the muscle fiber. Skeletal muscle fibers have a "normal" threshold for fatigue, which is dramatically decreased with MG.
MG can also be detected by looking for particular autoantibodies (MG is an autoimmune disease), although it isn't always fool-proof. Roughly 10% of cases go undetected with those blood tests.
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