Hi dear friends from DGM!
Sorry for the english but my German is not good. I hope you will understand me and forgive me that I write in german forum in english.
My story
33 years old male. Previous healthy but for 4 years I have health problem which are going fast downhill.
Sympthoms:
BILATERAL AND SYMMETRIC HANDS atrophy, with pain, somethines burning and tingling. Actualy I haven`t loss any strenght but obvious i have muscle loss, and it is severe but again no muscle weaknes and loss of fine hands skill. The atrophy is symmetrical, and it is like reversed split hand - the muscle between thumb and index finger is preserved all others are atrophying. I know that in ALS it is the oposite... I have also symmetrical forearm atrophy and wrist atrophy. Everything is stated by doctor
TONGUE ATROPHY. This is actually very interesting because it is vevy very severe, but I have full tongue movement and strenght, but tongue is 1/2 of it`s size.... The atrophy is on the lateral borders and the surface part of the tongue is just fine.... Where is the atrophy I feel deep burning and acing pain, also the muscle is darker and is like inflamed....
I can moove my tongue, can speak clearly, it is strong but all doctors told me there is very severe atrophy.... Also with burning and stingling pain.....
This is like episodes - it if like flares - bad for 5-6 days and in this time it is atrophing and painful, affther that 1 month without problems. When I have such episode it is very hard for me to speak, I am slurring only by this time.
Swallowing difficulties - it is hard to swallow, but only sometimes.
Whole body is trembling when i flex my muscles... It is like jerking movement...
Severe cold intolerance - in cold weather I am shaking like mad. I cannot control my muscles...
Brathing difficulties - I have episodes when I cannot breath. They make me test my FVC is 110%
Blurrry eyes with a lot of floaters.
Painfull joits in arms and heels.
Hyperreflexia - all my reflexes are brisk. But I think it is all my life. I also have clonus in every single muscle
Fatigue - very tired all the time.
Whole body muscle twitching but with times this is going less and less.
Test till now:
4 MRT - all clear
LYme test - all clear
11 EMG - everytime different - sometimes with polyphasic mups, sometimes with big, sometimes with small, sometimes normal EMG. The last one was from professor and all muscles have pollyphasic mups but everything else was normal. No active denervation even in tongue. He told me that he suspect some myopathie in tongue but kannot say this in the moment.
All blood test in normal levels, just some elevate borderline CK - 208,( value is till 190) and elevate ESP and CRP and some slight elevate livel ensymes - alat
So in short I am in the nowwhere... The doctors told me I dont have emg kriteria for ALS but have something they don`t know what is.
I am now searching for diagnosis via internet just sharing with others and hope the somebody can give me an advise or have similar sympthoms.
I suspect some king of infection but..... who knows... I have a little doughter and really want to see her grow... I am not afraid from death but I have 1%% hope that this can be something curable....
Greetings
Corwin
Sorry for the english but my German is not good. I hope you will understand me and forgive me that I write in german forum in english.
My story
33 years old male. Previous healthy but for 4 years I have health problem which are going fast downhill.
Sympthoms:
BILATERAL AND SYMMETRIC HANDS atrophy, with pain, somethines burning and tingling. Actualy I haven`t loss any strenght but obvious i have muscle loss, and it is severe but again no muscle weaknes and loss of fine hands skill. The atrophy is symmetrical, and it is like reversed split hand - the muscle between thumb and index finger is preserved all others are atrophying. I know that in ALS it is the oposite... I have also symmetrical forearm atrophy and wrist atrophy. Everything is stated by doctor
TONGUE ATROPHY. This is actually very interesting because it is vevy very severe, but I have full tongue movement and strenght, but tongue is 1/2 of it`s size.... The atrophy is on the lateral borders and the surface part of the tongue is just fine.... Where is the atrophy I feel deep burning and acing pain, also the muscle is darker and is like inflamed....
I can moove my tongue, can speak clearly, it is strong but all doctors told me there is very severe atrophy.... Also with burning and stingling pain.....
This is like episodes - it if like flares - bad for 5-6 days and in this time it is atrophing and painful, affther that 1 month without problems. When I have such episode it is very hard for me to speak, I am slurring only by this time.
Swallowing difficulties - it is hard to swallow, but only sometimes.
Whole body is trembling when i flex my muscles... It is like jerking movement...
Severe cold intolerance - in cold weather I am shaking like mad. I cannot control my muscles...
Brathing difficulties - I have episodes when I cannot breath. They make me test my FVC is 110%
Blurrry eyes with a lot of floaters.
Painfull joits in arms and heels.
Hyperreflexia - all my reflexes are brisk. But I think it is all my life. I also have clonus in every single muscle
Fatigue - very tired all the time.
Whole body muscle twitching but with times this is going less and less.
Test till now:
4 MRT - all clear
LYme test - all clear
11 EMG - everytime different - sometimes with polyphasic mups, sometimes with big, sometimes with small, sometimes normal EMG. The last one was from professor and all muscles have pollyphasic mups but everything else was normal. No active denervation even in tongue. He told me that he suspect some myopathie in tongue but kannot say this in the moment.
All blood test in normal levels, just some elevate borderline CK - 208,( value is till 190) and elevate ESP and CRP and some slight elevate livel ensymes - alat
So in short I am in the nowwhere... The doctors told me I dont have emg kriteria for ALS but have something they don`t know what is.
I am now searching for diagnosis via internet just sharing with others and hope the somebody can give me an advise or have similar sympthoms.
I suspect some king of infection but..... who knows... I have a little doughter and really want to see her grow... I am not afraid from death but I have 1%% hope that this can be something curable....
Greetings
Corwin
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