I was originally diagnosed approximately 7-8 years ago with
Polymyositis. After high dose steroids, Cyclosporin and a course of
Sandoglobulin (please excuse the poor spelling) it was decided that I
had Inclusion Body Myositis because I had not responded to
treatment. Eventually, after approximately 3 years & a different
consultant, I was told I had Miyoshi. I now see Dr Rose at Kings
College Hospital, London & I believe that I am involved in the
Dysferlin research at Newcastle (although I have not heard from them
in over 2 years & am trying to contact them at the moment to get a
more definate diagnosis.
Feel free to contact me if you want to speak to a fellow sufferer!
Hi, I'm Suzi from Surrey, England. I was originally diagnosed approximately 7-8 years ago with Polymyositis. After high dose steroids, Cyclosporin and a...
joesuzi.croft@...
Jun 15, 2001 6:33 pm
Hi Suzi, nice to hear from you! Your diagnosis story sounds quite difficult. I was somewhat fortunate in that, although some doctors I had consulted while I...
BWilliams16@...
Jun 16, 2001 5:04 pm
I was just diagnosed yesterday with Miyoshi Myopathy. I was originally diagnosed with LGMD when I was 18 (started having symptoms at 15). They were able to...
Glad to have you join the group. I have Miyoshi also, and had symptoms beginning at 18. I'm 43 now, and have used a wheelchari for the last 4 years. Like...
I don't know if it has been discussed but...I use toe-up braces and they help me to walk much better and help give me more stability as well. I recommend them...
I just found out about mine, as you know, well, at least specifically what kind of mutant I am. I am only 34, but I am about 10 years ahead of you as far as...
I have miyoshi myopathy. I believe they did a blood check on my mother. I don't remember them telling the results. She doesn't show any signs so she must be...
I used mine for years. They were great until I fell, then the toes took a serious beating, along with the knees. Trust me, in my case, the chair is MUCH...
Has anyone here had any joy with physiotherapy at all? My brother (also with Dysferlinopathy) has found it very helpful, and I am just about to embark on some....
I think I might be quite lucky as my metabolism seem to be naturally quite fast and I've always been pretty skinny, I'm hoping it will help with my mobility -...
Hi Everybody, I have found below pasted article regarding this ivig treatment. I am new at this group and would like to know if any one tried this treatment?...
Hi, sorry for the delay in replying, I have limited internet access. It's early days for me with the disorder, I'm 28 now and, although looking back, I can...
Thanks ron, that's clarified things for me to some extent, I didn't realise the genetics of the disorder were so hazy still. Yes, there are definite pluses for...
I think the recessive bit means that both of your parents carried the defect and both passed the defective gene on to you. If your parents both carry it there...
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