I was diagnosed with mitochondrial myopathy, which is very rare. It's lumped in with the Muscular Dystrophies but isn't an MD itself.
I've been wearing toe off leg braces for about a year now and it's been extremely helpful. If I don't wear them, I need to use forearm crutches or risk falling down. It took some getting used to. The biggest hurdle was my own perception of what leg braces meant -- acknowledgement of disability. Despite the fact that it would make me more able, I was resisting the idea.
I've lost some sensation and muscle control below the knees. Reflexes in knees, elbows and wrists are quite weak now. I can still play the piano, but not the advanced works I used to be able to pound out. My heart seems to be strong, and my mind is still intact, so I'm moving forward with life.
I had to stop worrying about how this could stop me from living or just what my future might look like, or what my actual diagnosis was. The worry was driving me nuts and stopping me from just doing what I need to do to be happy or keep my family happy. What needs to be done takes more effort than it used to, and I need help, but I'll do what I can while I can still do it.
I'm doing yoga on a very beginning level and that seems to help with endurance and muscle tension, so I'll continue with that.
My best to you, Sue. I hope you are well.
Christine (aka "toeoff")
Originally Posted by suewild44
Has your doctor tried to test you for Interstitial Myositis? It sounds very similar to me and it is a rare disorder and he/she might not have thought of it.
Let me know how you go