michigani

Gayle I understand and feel your pain. I have an undiagnosed LGMD since age 41. Now I'm 47. I always try to be chipper, upbeat, joking and smiling around everyone; and for the most part that's the real me. But once or twice a month I crawl in bed after a rough day and think "What am I going to do?". But you know what....it always works out. LGMD moves slow enough that I have time to make adjustments as needed. Don't wait until it's too late. Get things you need before that point. I've gotten toilet risers, a lift recliner (which I love), an aluminum director's chair that I take to picnics and even indoors at people's homes. All these things help physically and emotionally.

I worry about passing it on to my 2 teenage daughters so I can appreciate that too. I hope you're just discouraged, not depressed. The biggest help for me is that I am very pro-active in my treatment. I surf the internet weekly looking for news and tests we might try. This makes me feel as if I partially control my own destiny. To date I've had 9 negative DNA tests and 3 negative tissue stain tests from my muscle biopsy. But there are over 70 MD's and in many the bad gene is still not known. My biopsy did reveal ragged fibers and cell necrosis.....a classic sign of muscle disease.

Hang in there. There are huge developments monthly. I truly believe we'll see a cure in our lifetime. One of the MDs, Pompe's Disease has already been found treatable and has been reversed in some patients.

I'll answer anything that my experience and research has taught me.

Mark