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Nicky151179

Active member
Joined
Aug 6, 2013
Messages
48
Reason
Learn about ALS
Country
Au
State
Nsw
City
Corowa
Hi there I have another neurologist appointment coming up a doctor think I have lower and upper motir damage,my eyebrows spasms a lot I've had wasting in face and muscles have dropped its changed my whole face I get twitching near cheeks and lip when used my tongue also twitches but no slurring or choking.i have had muscle tone everywhere on body and twitches too I get a really sore neck and back.if anyone with bullbar onset can tell me if this sounds like bulbar onset that would be great I'm hoping its something else and not als,all of you are very strong people.any replies would be really great as you can see pretty scared
 
Nicky,

I'm not wicked as you wrote on my wall. I hope it's your intention to play nice here. We are all in pain. What you describe, in my opinion, does not sound like ALS at all.

A doctor, I am not: but you may want to research muscular dystrophy - specifically :

-----------------------------------------------------


Facioscapulohumeral

childhood to early adults

Symptoms include facial muscle weakness and weakness with some wasting of shoulders and upper arms; progression is slow with periods of rapid deterioration; life span may be many decades after onset.



And

Myotonic

20 to 40 years

Symptoms include weakness of all muscle groups accompanied by delayed relaxation of muscles after contraction; affects face, feet, hands, and neck first; progression is slow, sometimes spanning 50 to 60 years.



Good luck
 
Hi thx heaps but neurologist has already said i dont no family history and i have no myotonic discharges,but i know they do sound like my symptoms alot.the doctirs are saying the flaccidity in muscles is lower motor neurone and spasticity is upper so they think ive got the both problems no.it just is never ending with tests and know answers i feel as its progressed quick,was wondering if this was norm with bullbar onset?thx heaps for reply xxxx
 
I did not have family history either, I don't know what myotonic discharges are but I had a muscle biopspy done and that is what diagnosed me with mitochondrial myopathy which is a form of MD. It took 5 years to get that answer. There are also several other people on this forum with a mito disease. We all had muscle bio done.

2 of these people that I have talked to had no family history either. My dr told me that adult onset can be from environmental exposure. My insurance would not pay for genetic testing.
 
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