clear atrophie of left lower arm

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Re: clear atrophie of left lower arm

Postby German2 on September 26th, 2016, 9:10 am

Hi together,
I come back after a longer time...I am stil taking cortisone and from time to time I am fine....though there is ongoing muscle decline (arms, shoulders, neck...), symmetrically, so neuro is not sure.."Yes it looks strange..." Small fiber neuropathie is confirmed. Now it is getting a bit colder here and today I feel like got stuck in my own body...They still get my tongue a close look during check up. My clinical is quite normal. Lower reflexes are low, upper brisk, but symmetrical. No stomach reflexes but symmetrical...Now I am checked for channelopathy, but I think this is misleading. Small Fiber is not a comorbidity as far as I know...

I am not in a good mood...;-(
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Re: clear atrophie of left lower arm

Postby German2 on December 9th, 2016, 6:29 am

Hi there,
I am checking in again. I have no great news to tell though.
The genetic test on channelopathy is still in progress.
Now I am checked for paraneoplastic syndrom. Yesterday I had an Xray of my lungs....one of my worst hours to wait on the outcome, I swear..But I've got the all clear after waiting, waiting.
I have Small Fiber Neuropathy and a "percussion Myothinia" was identified in clinical..
Yesterday I've gave blood for a multielemental analysis (heavy metals). On my own budget...

Still got the "all clear" for MND. No signs...(though my tongue twitches from time to time, but I have this periodically since years, my back twitches quite often, my left foot constantly since 3,5 yeras)
On symptoms side, some got better, some popped up. My fatigue is getting stronger, preventing me from having fun in my life und falling asleep together with my kids.
Stress and cold are strong triggers for paresis.
I was at a fun park with my kids on last weekend. It ended up in a catastrophy...in the end I could not swallow, not breathe, hardly move. My left eye I lost visus (I have a lesion there)....
went to the ER. No findings. CK in range, Kalium in range...nothing alarming. Now I've got Salbutamol from my neuro against lung spacm.
You can imagine that I was very nervous being checked for lung cancer, which is ultimative deadly when paraneoplastic...
I have lost about 10 kilos in the last month...

Now I will be checked for other tumors. It is not fun, believe me...Despite MND is scratched out from list in the moment...
Especially for I am responsible for my kids. I've lost most of my friends, my husband (whom I had to beg strongly to bring me to ER...), and don't know whom to call in emergency without making knee falls...
MND option is very bad...cancer option also...
But the good news: Up to now, pain is very tolerable for I still live with Prednisolon...but I fell that the Small Fibe Neuropathy is conquoring my feet.
Sometimes I have hole body cramps. The neuros in University registred that even my abdomen muscles are pathologically tensed...(there was a hyperreflexia of my stomach muscles I think...)

All I can do is pray..and wait. I have an "invitation" to a diagnostic hospital for a three month stay..but what to do with the kids. Give to an unknown family? To my parents in law for whom I am guilty for everything...? Or wait..and being checked for cancer at home..? I decided for the latter for now....
MND is far away now in my thinking, for my paresis in arms, the period everything fell out of my hands, is for now, over. It may come again...but it is not constantly progressive. Visus is normally not part of the MND picture, reflexes are not indicating it..Small Fibers, some large fibers and even autonomic nerve system are affected....
But the waiting game is killing me. I've lost everything....
German2
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Re: clear atrophie of left lower arm

Postby German2 on December 9th, 2016, 9:04 am

But ...by the way. Isn't that hyperreflexia of stomach muscles a sign of 2nd Motorneuron?
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Re: clear atrophie of left lower arm

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