No Support for Bulbar ***?

[Maaarten]

No one for support?

 

[jennybaby123]

Does it feel weak or is it actually week?

 

[Maaarten]

I don't know, with bulbar*** is it the cheeck that goes weak? Not only swallowing, tongue... It's only my left cheeck

 

[jennybaby123]

Didn't you say your tongue twitches too? And how do you know your cheek is weak? Do you mean numb?

 

[Maaarten]

yep tongue twitches too.It just feels weird, maybe numb , I don't know, don't know how a cheeck really can be weak. I still can move it (if I put my mouth up). I had a clinical a couple of months ago and they said I was fine? Maybe I'm not?

 

[inzTwoToneTunes]

Maarten,Bulbar als does not start with weak cheeks. Bulbar als starts with seriuosly slurred speech or you can't swallow any more. And keep in mind bulbar als is the rarest form of an already rare disease. Bulbar is so rare that they say almost all cases are herediatry. You really are fine. Try to stop obsessing and get some exercise even it is walking down the street and back. 2 years ago when this started I could not even walk 2 blocks or ride a bike, but now I can ride my bike, play softball..............Granted not without limitations right now due to bfs, but my point is I had to start again somewhere and one day I fixed my bike and took off. Small steps at first but you have to move forward.DD