corwin
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Hi, I just want to post.
Yesterday I come back after check up with emg specialist.
So sumarry:
- 2,5 years with symptoms.
-Brisk reflex overall
-stiffnes in libs( after I take prednisone it`s gone, after stoping the steroids it`s back)
-symmetrical muscle atrophy in hads and wrst
-summetrical tongue atrophy with some pop rock rile fasciculations and very sharp burning pain
-crisis in the night when i cannot breath and all muscles lose strenght for 2-3 hours,
-my throat is closing i cannot move
-swelling of hands and afther that they atrophy very fast
so everything is getting slightly worse.
I have very heavy hands atrophy very symetrical and not in split hands way, but all the muscles.
Hands are not weak, fine movements ok, but losing muscle mass.
No sensory deficit albeit some butning and little pain
Thongue atrophy - very strange almost tripple furrowed with severe burning and pain.
Where is the pain there is the atrophy. strong and fleixble, fasciculation - occasional, i feel them. Atrophy is getting slightly worse - now the tongue is 1/2 from the size before 2,5 years.
I can move it fast, hold it otside streng for 5 minutes, whistle, push cheeks but losing muscle mass.
I am slurring sometimes, sometimes can speak normally. Can say Peter Piper very good
shortness of breath - with exerton and when I have crisis in the nights
blurry vision
eyes get stopped moving and heavy and when I wake up i almost cannot move them. 5 minutes late there are ok
very heavy and weak wrists. Cannot use ski any more. All muscle gone just skin and bone. This is also very symmetric and in both sides equal
ankes also veak and painfull
very painfull joints, very very much in heels, ancles, knees and fingers.
evelated and almpst gone from prednisone.
weak swallowing.
So when i take prednisone i have 200 %s more energy and all pain are gone. Also little less fasciculation,no tongue pain and super good swallowing.
when i stopped it i am one square one....
Now I am doing hyperbarc chamber but afther 15 session no real inprovement exept in energy levels and strenght
Almost everything is gone worse fot 2.5 years but i am still fully functional with some limitations when i am tired. Everything what is happening is going on symmetrical way.
Also heavy skin problems - skin is peeling around nose and mouth and on the scalp.
The doc says dermatitis, not dermatomyosisit - crk is 190 - which is almost normal.
Liver ensymes slightly eleveated
I make the emg yesterday - she tested 5 muscles.
In all there was 30-50% pollyphasic mups
in one there were big mups and decreased interference pattern.
In all the found fasciculatons.
BUT BUT BUT no fibrilations and psw in no one - even in the most atrophied abductor digity minimi.
I am totally baffed. She was also and say it doesnt look lime mnd but it can be....
Some king of neurological damage which is chronic.
In the farourite hand muscle - firs dorsal interossei is atrophy but no emg changes....
Next week i am going to make 4 cicles of plasmapherresis - we have some proffesor from russia who makes so calles mini plasmapheresis - with nano filter and he used only 5 % from the blood. The professor says it is totally safe and as efficint as original plasmapheresis...
They don`t want to make bypsy because in my country they cannot make good investigation on muscle....
I am pissed of everything, just living day by day i watching how I am getting worse and worse every day....
So if I find it is curable i hope all my posts will help somebody with some sort of same problems and safe presious time in investigation....
Corwin
Yesterday I come back after check up with emg specialist.
So sumarry:
- 2,5 years with symptoms.
-Brisk reflex overall
-stiffnes in libs( after I take prednisone it`s gone, after stoping the steroids it`s back)
-symmetrical muscle atrophy in hads and wrst
-summetrical tongue atrophy with some pop rock rile fasciculations and very sharp burning pain
-crisis in the night when i cannot breath and all muscles lose strenght for 2-3 hours,
-my throat is closing i cannot move
-swelling of hands and afther that they atrophy very fast
so everything is getting slightly worse.
I have very heavy hands atrophy very symetrical and not in split hands way, but all the muscles.
Hands are not weak, fine movements ok, but losing muscle mass.
No sensory deficit albeit some butning and little pain
Thongue atrophy - very strange almost tripple furrowed with severe burning and pain.
Where is the pain there is the atrophy. strong and fleixble, fasciculation - occasional, i feel them. Atrophy is getting slightly worse - now the tongue is 1/2 from the size before 2,5 years.
I can move it fast, hold it otside streng for 5 minutes, whistle, push cheeks but losing muscle mass.
I am slurring sometimes, sometimes can speak normally. Can say Peter Piper very good
shortness of breath - with exerton and when I have crisis in the nights
blurry vision
eyes get stopped moving and heavy and when I wake up i almost cannot move them. 5 minutes late there are ok
very heavy and weak wrists. Cannot use ski any more. All muscle gone just skin and bone. This is also very symmetric and in both sides equal
ankes also veak and painfull
very painfull joints, very very much in heels, ancles, knees and fingers.
evelated and almpst gone from prednisone.
weak swallowing.
So when i take prednisone i have 200 %s more energy and all pain are gone. Also little less fasciculation,no tongue pain and super good swallowing.
when i stopped it i am one square one....
Now I am doing hyperbarc chamber but afther 15 session no real inprovement exept in energy levels and strenght
Almost everything is gone worse fot 2.5 years but i am still fully functional with some limitations when i am tired. Everything what is happening is going on symmetrical way.
Also heavy skin problems - skin is peeling around nose and mouth and on the scalp.
The doc says dermatitis, not dermatomyosisit - crk is 190 - which is almost normal.
Liver ensymes slightly eleveated
I make the emg yesterday - she tested 5 muscles.
In all there was 30-50% pollyphasic mups
in one there were big mups and decreased interference pattern.
In all the found fasciculatons.
BUT BUT BUT no fibrilations and psw in no one - even in the most atrophied abductor digity minimi.
I am totally baffed. She was also and say it doesnt look lime mnd but it can be....
Some king of neurological damage which is chronic.
In the farourite hand muscle - firs dorsal interossei is atrophy but no emg changes....
Next week i am going to make 4 cicles of plasmapherresis - we have some proffesor from russia who makes so calles mini plasmapheresis - with nano filter and he used only 5 % from the blood. The professor says it is totally safe and as efficint as original plasmapheresis...
They don`t want to make bypsy because in my country they cannot make good investigation on muscle....
I am pissed of everything, just living day by day i watching how I am getting worse and worse every day....
So if I find it is curable i hope all my posts will help somebody with some sort of same problems and safe presious time in investigation....
Corwin
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