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 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...
Sorry about posting and disappearing like I did. Our computer took a crash and I have had to rebuild it. Anyway, enough about my woes. I will try to be a...
Wow, that does seem fast. I hope you can get someone to listen to you and figure out what is making it progress so quickly. It seems that one of the...
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...
My name is Donna. I'm a 37 year old mother of 2 teens and a grandmother to one beautiful 2 year old little princess. I was diagnosed with LGMD at the age of...
Hello, Donna, My suggestion would be to ask for a blood test to check for the most recent types of genetic mutations, or however you may want to put it. I was...
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 -...
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...
Hi everybody, I have found this group while I was searching desperately for a cure/information for the LGMD 2B through internet. I would be glad if you do have...
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...
This message if for those members that are suffereing from dysferlin deficiency and have been diagnosed with Miyoshi or LGMD2B I run a family foundation that...
Thank you to those of you who have taken the time to register on our website. Some of you have experienced difficulty in registering and we are sorry. The...
Thank you to those of you who have taken the time to register on our website. Some of you have experienced difficulty in registering and we are sorry. The...
I need to put the word out to anyone who has not yet registered with the Jain Foundation. I spoke with Plavi Mittal, PhD for quite awhile today, she is a...
Hi everyone, Let me add my words of encouragement to all patients to contact Plavi. I have known Plavi for several years, and we have exchanged information on...
Hello to all group members, I encourage anyone who has not already done so to register with the Jain foundation. http://www.jain-foundation.org The foundation...
Hi everyone, I am very glad I found this group about dysferlin. I have allready tried to post a message after becoming a member but I am not sure if it worked...
... I just did! And I also became a member of this group because I hope I will get more information here then what I get from my neurologist. I was diagnosed...
Hello to everyone I am a 44 years old man who started to have neuromuscular weakness at 15 years old. I am married and I have my own business. I am new to this...
They took some muscle tissue for DNA research, but that is more then a year ago. I still don't have any results. My neurologist explained to me that it can...
hi there my name is derek hill im from scotland ive had problems since i was 25 im now 35 is there anything you have tried that has been helpful to you i,ve...
hi there my name is derek hill im from scotland ive had problems since i was 25 im now 35 is there anything you have tried that has been helpful to you i,ve...
I have found gentle exercise very helpful (esp. swimming). I have been surprised at how much I can do. I think the muscles that are ok are in better shape now...
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