I have finally been diagnosed with Inclusion body myositis. Symptoms are much the same as LGMD and there is no cure or treatment. Doctor said it used to be called late onset MD; but has now been grouped in myopathies. I have been referred to a different specialist that I will see on my next visit. He specializes in muscle diseases and is involved in clinical trials. Who knows, maybe down the line, there will be some help for all of us. Anyone else out there who has this diagnosis? He also told me to do weight bearing exercises. I guess I'm glad to finally get a diagnosis, but I was hoping for something that could be treated. He also said they don't know what gene is involved.
I'm glad you finally got a diagnosis. I'm not familiar with this specific disease, but will do some research at some point to get a better understanding of what's happening with you.
I'm sorry it's not something treatable. Unfortunately, most of us are in that boat. While knowing what it is and being able to put a name to it doesn't really change the reality of it. And I'm sorry for that for you and everyone else (including myself) that has to deal with this kind of thing.
Thanks Kathy. Like you say, we're all in the same boat. Even though I have my diagnosis, I still can't believe this is all happening. I keep looking at ACE 031, and pray that it will be the miracle we are looking for. It seems to be something that would help all of us as it's purpose is to rebuild muscle. It does help to keep in touch with each other. Though mine is not grouped with MD, it is very similar to MD. There are very few comments on the Inclusion Body Myositis site. Not too commom a diagnosis, I gather.
I also was diagnosed with IBM in Sept. 08. The Rheumatologist I went to had never had a case and does not know much about it except that there is no treatment that seems to help. I go to water therapy 3 times a week and work in the gym with arm and leg machines a couple of days. These things have helped but I still cannot climb stairs or get out of a chair easy. The water therapy was probably the best thing to start with but is something I will keep up the rest of my life. I am 67 and always been active. This has slowed me down, but I am not giving up. I am communicating with a lady in Mississippi who has had this disease for 12 years, she does water everyday and is on a rollator walker now but doing pretty well. I have gained some strength, but have a hard time walking as my balance is not what it use to be! Let me know of anything new you might find out!!
Doris, it seems as though we are both experiencing IBM at the same stage of our life. I am 68 years. Did anyone else in your family have it? My mother and her father both had it. My mother was diagnosed as having polymyositis; but now that I have my diagnosis, doctor says she probably had the same thing. Our symptoms are the same; but she was a bit older than me when she first started having leg weakness. She was treated with prednisone for polymositis, but it didn't help. My grandfather was never diagnosed except with progressive muscle atrophy. I am assuming I have the hereditary type rather than sporatic. Neurologist said 95% is sporatic, with the other 5% hereditary. Not much on the hereditary type in the way of information. As you say, doctors are not well informed on it either.
I was diagnosed in Sept of 08. I do water therapy and also go into the gym when I feel like it. I can tell my strength has started downhill, but I also missed a lot of therapy while we took a trip. I do not take anything, just therapy as they say there is nothing to take. Do you take any of the herbal things, if so do they help and what are they. I have trouble swallowing now and that really bothers me. I won't take a pill if my husband is not here afraid I might choke! Let me know how you are doing! Let me know how you are doing!