Frankly I was hoping for Kennedy's. At least with that I might grow boobs. I know what you're thinking, "Poor guy. He'd grow boobs."
BUT! Who doesn't like boobs, right? Would they grow in like a teenager's though? Like little traffic-cone shaped A-cups or since I'm old would they go right to saggy?
Not that it matters since it looks like I have SMA. Color me disappointed.
Aren't I supposed to have muscle weakness though? I'm as strong and as graceful as ever. 100% of my issues are speech, swallowing and breathing. It's taken me seven years to get to this point so it's not bulbar ALS, like the SFEMG test was pointing at. That would have killed me a long time ago.
My shoulders, hips and chest seem to be as strong as ever (minus whatever I've lost since I'm pushing fifty years old (no one ever asks which side you're pushing it from. Think about how you can use that ;-)).
Does anyone else have type 4 and have any advice? I'm baffled. Why am I not getting any weaker and is there such a thing as Bulbar SMA?
Greetings all,I see a bunch of new people since I last signed in, asking questions (yay for seeking support!)Unless you are lucky, it will be difficult to find a good doctor who accepts you, sadly. But we are here for you.My tale of woe is 22 years old at this point. To get here was a rocky trip. Many doctors didn’t understand what I was dealing with. I even had the tough-love doctor who tried...
Hi all, I've just felt really limited lately. There have been some events family and friends have wanted me to go on, a camping trip with my family and going to a festival (A quiet one I'm told) and I've even been invited out for drinks with someone I knew before I got ill. I feel really bad turning them all down but I know if I go I'll be exhausted and feel really crap for a while after. At...