Unread 01-10-2017, 03:45 PM #1 (permalink)
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Default update and maybe, just maybe misdiagnosed

Hi,
I post my update.
Thanks to everybody for the support!
As you know I was give a MND diagnosis last month.
So I make an apoinment for second opinion in my country. It was yesterday, they make a lot of test, today I received the results.

1. Brisk reflexes - overall, positive bilateral Hoffman, no babinski. Fasciculation seen in 2 muscles. A lot of postural tremor, muscle shakes with exertion.
2. Whole body muscle wasting - the docs noted wasting in shoulders, hands, legs, calves, forearms and neck. Wasted tongue - both lateral sides are wasted but center is strong and some fasciculation are noted. Wasted but strong tongue -thue enigma...Also can move it really fast.
3. Emg findings:
no fibrillation potentials except in thumb muscle but the doc told my it can be end plate fibrilations - they were not rythmic.
all muscles have pollyphasic mups, some have high amp mups, but no one have long duration...

the strange thing - my tongue has most wasting bilateral. They checked left and wright side. Did not found fibrilations because i can`t relax it but all the mups are low amplitude, short duration and pollyphasic.
All muscle have full inteference pattern
The docs told me this can be seen in myopathy. They pressed the sides of tongue and there was pain only by light force .
So for now they excluded MND, told me I`m so complicated that they will make a documented case study for me.
I feel like lab mouse....

Now they will try to exclude myopathy - pollymyositis or dermatomyositis( because most wasting is in proximal muscles), some dystrophy and vasculitis. They even suspect CIDP because of the pain in tongue. Still waiting for Kennedy DNA test..
SO again square one..... I have done this tests before but they want to make the again.

I was a little better while on prednisolone so one of them suspect something autoimune( the blood markers were negative)

Thank you for support I will continue and will find the reason and I will write.
The good thing is no MND dx by now, the bad - i`m going weaker and progressing worse....And the dx of ALS is when there is nothings left - the didn`t find anything by now...
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KimT (01-10-2017)
Unread 01-21-2017, 05:20 PM #2 (permalink)
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Default joint pain and body shaking

Hi to all...
I have some questions...
I have recieved 99% sure dx of MND. Unnamed because is very strange..
still waiting for kennedy test
I want to know something - is it possible to have whole body symetrical muscle atrophy??
My whole body is getting weaker( yes now I`m weaker) and I have marked atrophy in hands, quads, shoulders, neck , pectrorals, butt and foots... It is all very symetric..
I read everywhere that in Als most cases are asymetrical but I`m loosing muscle mass everywhere.. I`m afraid that i will be paralyzed in one moment with all my muscles.. The muscles are hard to touch but wetting smaller and smaller..
The doc was very surprised when he saw me yesterday... Also my joints in fingers and Heels hurt me so much... Also bilateral...
Last Emg shows no denervation in muscle with very obviuos atrophy and chronic denervations in both legs...
Twitching is less prominent but is very interesting - bfore to loose muscle I feel them stiff and somekind numb and after that i loose muscle mass...
And last question- my whole body and muscles are shaking when i move them or get slightest exertion... like whole body clonus.. it is everywhere. The doc dont know how to fix it...`
Did you have such problems

Thanks
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Unread 01-21-2017, 06:12 PM #3 (permalink)
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Default Re: joint pain and body shaking

Corwin, I've never heard of anything like that. Remember that ALS attacks the nerves in the brain in order, not all at once. Really think you're still looking at some other disease, not ALS.
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Unread 01-21-2017, 07:07 PM #4 (permalink)
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Default Re: joint pain and body shaking

Atsugi, I hope also, but with wasted fasciculating tongue 1/2 from starting size.... and a big swalowing troubles also....
The odds for something else are very very slim ( my neuro doc words..)
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