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Recently Diagnosed With SMA4 Based On Deketion If The SMN1 Gene. How Do I Know If The SMN2 Backup Gene Produces Adequate Protein?
I'm recently diagnosed with adult-onset SMA based on the entire deletion of the coding sequence gene SMN1. Is there a test to determine if the backup gene SMN2 produces enough protein to counter the deletion of the SMN1 gene? Also, I'm getting conflicting stories from local neurologists. One says it's adult-onset SMA and the other says you're just a carrier. So what's going on? My symptoms include constant tingling and spasms in my feet and legs, in my hips, across my shoulders and neck. I… read more
From what I understand carriers do not have any symptoms. The later the onset the less severe it will be. The number of backup SMN2 genes doesn’t predict severity alone. Are you taking any treatments… read more
Are There Any Moms Who Had Been Diagnosed Before They Had Children?
I have SMA3
I’m 36 and was diagnosed at age 5. I just had my first baby almost 5 months ago. It’s tough. So worth it but I’m struggling during the day with him due to lack of strength and covid… read more
SMA Adults, What Have Your Been Your Greatest Accomplishments And Some Struggles You Have Had.
Growing up, at what age did you understand or had been told you have not something wrong with you but that you have special muscles unlike the other kids? (Thats what we call connors condition, to help his older 8 yr old brother understand) connor is type 1 and is currently 7 months old. Recvd zolgemsa on halloween. Didnt finish our last loading dose of spinraza. If you currently do maintaince dosing of spinraza has it been successful for you? Pro? Cons? Effectiveness still? At what age did you… read more
For Those Adults With SMA, How Old Are You And Which Type?
I am 72 with ALS type 3
Surgery For Scoliosis
Im not a child,my doctor said in about 8years I will probably have to have surgery but it involves 3levels And it would be a major surgery so wants to hold off for awhile. Can you tell me why maybe
What kind of surgery?
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