Hello again. Thank you for taking the time to read (and possibly respond) this this post.
I am at a total loss. I'm now 39, and I have tried to get answers for a little over a year, but I just keep getting insidiously worse. I don't know who to ask or what to do. I am very well aware that you are caring people, not doctors, but you've been through the "medical process" and maybe can give me some insight. I have seen many doctors and have no diagnosis of anything. When I asked point blank, the ALS clinic doc. recently told me that it was not psychological. (I think I'm still hoping it's all in my head. I'm probably more than a little crazy by now; this has been the worst period of my life, and I've been through some rough ones, like everyone else). Thank you.
Here is a list of what is going on with me currently:
EMG end of May findings- rare/few polyphasic motor units in several muscles and decreased amplitude vol. motor units in all muscles tested. This was done at an ALS clinic. Doc. said it did not support ALS diagnosis (great!) but I don't understand why I suddenly have decreased amp. and polyphascic motor units (previous EMGs all "Normal" in these areas. And I've had...a lot). And then I looked it up. The ALSA.org site said these are "possible signs of lmn denegration." Do I claim to be more knowledgeable than a brilliant doc at a famous ALS clinic? No! But I like to understand. And I don't).
Tongue cramp on left side, weakness, occasional fasciculations (yes, they are real, at rest, can't be felt, etc. I have a video, but after reading how much these are disliked, decided best to leave it off), some difficulty speaking, tongue points to left side upon full extension
Soft Palate/Uvula Soft palate lower on left side, uvula deviated to right
Facial muscle weakness, fasciculations, jaw “pulses” when muscles stimulated
Left Foot Less “firm” than right foot, occasional cramps on bottom (BAD), fascis on bottom and top, hard to walk on it, especially without arch support, toes often curled in in morning, pain and fascis after use or stretching, one toe weak, I limp in morning and evening or when "cold"
Left Leg Weakness in Upper Leg muscles, muscle “gives out”/shakes occasionally, atrophy in muscles, knee hurts occasionally, fascis common
Left arm/shoulder weakness and fascis
Hands atrophy in inter-digit muscles, atrophy beginning between finger and thumb, mostly on left but spreading to right, weakness in left wrist, soreness where there is atrophy, fascis at base of thumbs
Swallowing Difficult. Food/liquid “lingers.” Must drink a lot of water and brush teeth to avoid aspiration. Helps to swallow looking down. Produce prodigious odd mucous (saliva??)…very sticky. Spit a lot after eating.
Sleeping Difficult due to pain, fascis, breathing, and stiffness.
Reflexes brisk (grade 3-2)
Miscellaneous SYMPTOMS:
-sensitivity to smells
-high alpha TNF
-early morning waking
Thank you if you are still reading. I would not bother you except that I'm struggling to function. I think my family is falling apart, as a year is a long time and I'm not able to be the kind of wife and mother I was before all of this. And work is getting harder and harder. (Teaching requires a lot of talking, strength, and energy). I feel like ever part of my life is slowly slipping away. Any advice, criticisms, etc. are welcomed. Thank you in advance.
I do have some specific questions.
1. Did anyone have an EMG like this early on?
2. Has anyone gone through anything similiar?
3. What should I do now? I have had ever test known to man (I think). I AM NOT CHASING AN ALS DIAGNOSIS, but my very limited knowledge and research seems to point to something in that direction. I'd be happy as a clam if I could find anything else that would explain the situation or if I could walk, swallow, have strength, etc. normally again.
Thank you.
-Lea
I am at a total loss. I'm now 39, and I have tried to get answers for a little over a year, but I just keep getting insidiously worse. I don't know who to ask or what to do. I am very well aware that you are caring people, not doctors, but you've been through the "medical process" and maybe can give me some insight. I have seen many doctors and have no diagnosis of anything. When I asked point blank, the ALS clinic doc. recently told me that it was not psychological. (I think I'm still hoping it's all in my head. I'm probably more than a little crazy by now; this has been the worst period of my life, and I've been through some rough ones, like everyone else). Thank you.
Here is a list of what is going on with me currently:
EMG end of May findings- rare/few polyphasic motor units in several muscles and decreased amplitude vol. motor units in all muscles tested. This was done at an ALS clinic. Doc. said it did not support ALS diagnosis (great!) but I don't understand why I suddenly have decreased amp. and polyphascic motor units (previous EMGs all "Normal" in these areas. And I've had...a lot). And then I looked it up. The ALSA.org site said these are "possible signs of lmn denegration." Do I claim to be more knowledgeable than a brilliant doc at a famous ALS clinic? No! But I like to understand. And I don't).
Tongue cramp on left side, weakness, occasional fasciculations (yes, they are real, at rest, can't be felt, etc. I have a video, but after reading how much these are disliked, decided best to leave it off), some difficulty speaking, tongue points to left side upon full extension
Soft Palate/Uvula Soft palate lower on left side, uvula deviated to right
Facial muscle weakness, fasciculations, jaw “pulses” when muscles stimulated
Left Foot Less “firm” than right foot, occasional cramps on bottom (BAD), fascis on bottom and top, hard to walk on it, especially without arch support, toes often curled in in morning, pain and fascis after use or stretching, one toe weak, I limp in morning and evening or when "cold"
Left Leg Weakness in Upper Leg muscles, muscle “gives out”/shakes occasionally, atrophy in muscles, knee hurts occasionally, fascis common
Left arm/shoulder weakness and fascis
Hands atrophy in inter-digit muscles, atrophy beginning between finger and thumb, mostly on left but spreading to right, weakness in left wrist, soreness where there is atrophy, fascis at base of thumbs
Swallowing Difficult. Food/liquid “lingers.” Must drink a lot of water and brush teeth to avoid aspiration. Helps to swallow looking down. Produce prodigious odd mucous (saliva??)…very sticky. Spit a lot after eating.
Sleeping Difficult due to pain, fascis, breathing, and stiffness.
Reflexes brisk (grade 3-2)
Miscellaneous SYMPTOMS:
-sensitivity to smells
-high alpha TNF
-early morning waking
Thank you if you are still reading. I would not bother you except that I'm struggling to function. I think my family is falling apart, as a year is a long time and I'm not able to be the kind of wife and mother I was before all of this. And work is getting harder and harder. (Teaching requires a lot of talking, strength, and energy). I feel like ever part of my life is slowly slipping away. Any advice, criticisms, etc. are welcomed. Thank you in advance.
I do have some specific questions.
1. Did anyone have an EMG like this early on?
2. Has anyone gone through anything similiar?
3. What should I do now? I have had ever test known to man (I think). I AM NOT CHASING AN ALS DIAGNOSIS, but my very limited knowledge and research seems to point to something in that direction. I'd be happy as a clam if I could find anything else that would explain the situation or if I could walk, swallow, have strength, etc. normally again.
Thank you.
-Lea
