sunshine9573
"Lately I have been thinking about what is next for me. currently I seem to have lost feeling below my waist, anyone else ever experience that?
For the first time since I moved here I wish I had never left Massachusetts. My level of care for my SMA is minimal. None of the Neurologists here are neuromuscular and they have never treated someone like me. I was in the ER for 3 days waiting for Radiology. Only to be told that the only thing they see is a lack of B-12 and I need to see a Neurologist to find out if it's an SMA thing or B-12, so I have been taking the B-12 shots as they made an MDA Clinic appointment. The appointment was a total waste of time. The neurologist said it could be either or, and didn't run a CT Scan or anything, all of my doctors refer us to Mass General but they refuse to give me an insurance exception. It's so frustrating."
Thank you for being part of the SpinalMuscularAtrophy.net community! It sounds like you've been really going through it recently. Did you move away from Massachusetts? Where are you living now?
One of our health leaders had similar concerns, finding doctors who could/would explain SMA to his new insurance company when he was just out on his own as an adult, with his own insurance. Here's an article he wrote: https://spinalmuscularatrophy.net/living/adult-care-transition I hope you get some real answers soon! Keep us posted on how you are doing. Warmly, Kathy (Team member)
I moved from MA ten years ago to be closer to my now husband. I currently live in NH and I had a fabulous Neurologist in Exeter, but sadly he left the practice. Then I had my migraine Neurologist in Manchester treating my SMA, I helped with information in the beginning and then he said it was fascinating so he did his own reading up and things were great until he left the practice, and I have been in limbo since, I was even without medication for 2 months and deteriorated quite a bit, I'm not even sure I will bounce back completely. MDA was my last hope and it was a huge disappointment. I have no idea what to do. At least he wrote up my Evrysdi prescription.