Hi dear sir My brother is 15 years maybe He can’t eat he can’t swallow and can’t walk can’t do anything his muscles are involuntary but he is so keen so please please tell me a way or a doctor please
@@berthadeuriarte1467 thanks dear sir❤️ We just went to a professional neurologist doctor that studied in USA and he said my little brother has spastic CP And he’s given him two kinds of tablet
Dear sir, I also have SMA type 3 and like I was active duty and they kept telling me was ALS back in 97 and I'm like no try again so like you said it was a simple blood work but it wasn't until 2000 when they figured out exactly what I have. I've had this disease and like you said there is no cure all they can do is just kind of maintain your pain. Thankfully my children are not carriers of this disease cuz the neurologist tested my children so they don't have it that's a good thing but I do know exactly what you're going through as far as they didn't know what was wrong with me either and I was medically retired from the military and I was medical. But apparently you seem to be as well as myself is like a neurologist dream case and it is very debilitating and there is no cure and right now I have afos a walker they just ordered me a power chair cuz eventually I'm not going to be able to walk have slow speech and every time I go in the hospital like 19 neurologist comes bum rushing me and I'm like what is going on they're like oh my God we don't even know that you even have SMA and you should not be breathing at this time I'm like you should not be telling a patient this and this is here in Dayton Ohio over at Miami valley so I understand what you're going through because I've been living with this for the last 20 years so I understand everything that you're saying because I have the same disease that you do.
Just met a girl that i really like. Found out today has SMA type 2 so thanks for sharing the info
You had treatments... What are they? If you don't mind... Thanks!
Hi dear sir
My brother is 15 years maybe
He can’t eat he can’t swallow and can’t walk can’t do anything his muscles are involuntary but he is so keen so please please tell me a way or a doctor please
Spinraza is the name of the medicine....My best wishes🤗
@@berthadeuriarte1467 thanks dear sir❤️
We just went to a professional neurologist doctor that studied in USA and he said my little brother has spastic CP
And he’s given him two kinds of tablet
Dear sir, I also have SMA type 3 and like I was active duty and they kept telling me was ALS back in 97 and I'm like no try again so like you said it was a simple blood work but it wasn't until 2000 when they figured out exactly what I have. I've had this disease and like you said there is no cure all they can do is just kind of maintain your pain. Thankfully my children are not carriers of this disease cuz the neurologist tested my children so they don't have it that's a good thing but I do know exactly what you're going through as far as they didn't know what was wrong with me either and I was medically retired from the military and I was medical. But apparently you seem to be as well as myself is like a neurologist dream case and it is very debilitating and there is no cure and right now I have afos a walker they just ordered me a power chair cuz eventually I'm not going to be able to walk have slow speech and every time I go in the hospital like 19 neurologist comes bum rushing me and I'm like what is going on they're like oh my God we don't even know that you even have SMA and you should not be breathing at this time I'm like you should not be telling a patient this and this is here in Dayton Ohio over at Miami valley so I understand what you're going through because I've been living with this for the last 20 years so I understand everything that you're saying because I have the same disease that you do.
@@theresalarson5298I have muscle atrophy. I just got diagnosed.. Not sure if there is a difference
Do you have atrophy on one side of your face?