progression question

[corwin]

Hi,
I just switch unfortunately the forums from DIHALS to thi one
Doc`s told me 99 % MND and with hypperfeflexia the chances for something else are pretty slim...
So a question
I have marked atrophy in my both hands and very very heavy in the tongue, also some in shoulder.
What to expect ??? Will they atrophy and become weak( I have no weakness now, even in tongue -just atrophy and fasciculations) all together.
Can it be possible to have some use of my hand or will both be useless...
Before atrophy I feel some kind of stiffnes and numbness and after that the atrophy begin.
What is the progression - linear or with jumps and plateous ????
I`m loosing muscle mass all over my body - quads, arms, shoulders, hands, foots. - will everything stop working at one time??
And what you do for heel pain - it is the most unpleasant pain that I experience - when I walk my heels hurt me so much

Thank you

 

[Nikki J]

This is very hard to answer. First progression is different in everyone but second your presentation is so atypical ( if it is MND, given the EMG you posted I still think they are jumping the gun)

Generally speaking progression can certainly have a plateau or many plateaus. Linear progression happens but I suspect is the exception. And loss of function generally occurs in one area and spreads but all over atrophy with no weakness? And symptoms for a couple of years? This is not what I have seen, experienced or heard of.

 

[WendyWooG]

Everyone progresses differently, I was fairly steady til this summer when I had a marked increase in loss of function. I went from using a cane to a wheelchair in fairly short order. My experience with this has always been weakness or loss of function first then the atrophy follows. Having the atrophy first with no weakness is not at all typical so I don't know how much other people will be able to advise you as we don't have the same symptom route.

Hopefully your doctors will be able to carry out more tests for you and give you a better idea.

Wendy x

 

[Firefighter58]

Nikki is right Corbin, you just can't tell. I have gotten some use back of my mouth so now I can eat and drink. But I still can not walk or talk. this is a very strange disease, and I don't know how much longer I will be able to eat again. I don't think many PALS have been able to regress like me but you just can not tell. One day at a time.
Al