http://health.groups.yahoo.com/group/dysferlin/ Dysferlin Deficiency Tue, 30 Jun 2009 09:33:15 GMT Keertee Kumar Saxena http://health.groups.yahoo.com/group/dysferlin/message/509 http://health.groups.yahoo.com/group/dysferlin/message/509 Hi Subhash, Thanks for giving me a call. As I discussed with you on phone, the doctors at AIIMS didn't advise me to go for Stem Cell therapy (8 months back). Tue, 30 Jun 2009 07:37:17 GMT http://health.groups.yahoo.com/group/dysferlin/message/508 http://health.groups.yahoo.com/group/dysferlin/message/508 Enter your vote today! A new poll has been created for the dysferlin group: How has your dysferlinopathy progressed? o Myoshi: Steady linear progression o Tue, 30 Jun 2009 07:19:35 GMT Rebecca Read http://health.groups.yahoo.com/group/dysferlin/message/507 http://health.groups.yahoo.com/group/dysferlin/message/507 Thanks for your message Kimberly. It's really good to know that you are still walking with Myoshi. I'm 31 now and seem to be progressing/degenerating Tue, 30 Jun 2009 03:12:08 GMT subhash_met http://health.groups.yahoo.com/group/dysferlin/message/506 http://health.groups.yahoo.com/group/dysferlin/message/506 Hi, This is Subhash, my wife has diagnosed with Dysferelinopathy. I have heard that some stem cell treatment is giving to the MD patients in India. Doctors in Tue, 30 Jun 2009 03:11:55 GMT Kimberly Niehaus http://health.groups.yahoo.com/group/dysferlin/message/505 http://health.groups.yahoo.com/group/dysferlin/message/505 I also have miyoshi myopathy. I am 57 and for the last 28 years I have been walking with knees hyperextended to keep my balance. I have been having pretty bad Mon, 29 Jun 2009 21:59:06 GMT Rebecca Read http://health.groups.yahoo.com/group/dysferlin/message/504 http://health.groups.yahoo.com/group/dysferlin/message/504 I think I have Myoshi dystrophy and have recently started experiencing more knee joint pain. Interestingly this has come on since I started driving again. I Mon, 29 Jun 2009 11:09:27 GMT Keertee Kumar Saxena http://health.groups.yahoo.com/group/dysferlin/message/503 http://health.groups.yahoo.com/group/dysferlin/message/503 Hi Elaine, I too am a patient of Dysferlinopathy. I come from India (age 27), the problem started at the age of 21. It was previously detected as Mitocondrial Sat, 27 Jun 2009 20:49:58 GMT Suzanne Croft http://health.groups.yahoo.com/group/dysferlin/message/502 http://health.groups.yahoo.com/group/dysferlin/message/502 Hi Elaine It's always comforting to fing people a bit nearer to home with similar circumstances. I'm in Surrey, England. I am 40, married and have 2 young Sat, 27 Jun 2009 20:05:26 GMT Christinabelle http://health.groups.yahoo.com/group/dysferlin/message/501 http://health.groups.yahoo.com/group/dysferlin/message/501 Elaine, Hello, my name is Christina Ray and I live in Broken Bow, Ok.  My symptoms started when I was 37.(May of 2007)  I first noticed that I couldn't tip Fri, 26 Jun 2009 15:20:23 GMT Thayer, Joshua http://health.groups.yahoo.com/group/dysferlin/message/500 http://health.groups.yahoo.com/group/dysferlin/message/500 Hi Elaine, I'm glad that you and your sister found this discussion board! If you check the archived posts I think you will find very many descriptions by Fri, 26 Jun 2009 14:17:44 GMT Elaine Byrne http://health.groups.yahoo.com/group/dysferlin/message/499 http://health.groups.yahoo.com/group/dysferlin/message/499 Hi, my name is Elaine. I am 35 years old and from Ireland.  I am Liam's sister, who has also joined this website. I hav e had myopathy for the last 10 years Wed, 24 Jun 2009 22:51:21 GMT Keertee Kumar Saxena http://health.groups.yahoo.com/group/dysferlin/message/498 http://health.groups.yahoo.com/group/dysferlin/message/498 Hi, Based upon my analysis of the disease (source being various groups/sites), lack of dysferlin affects only the fiber muscles. I don't think it does affect Tue, 23 Jun 2009 23:52:09 GMT baw1064 http://health.groups.yahoo.com/group/dysferlin/message/497 http://health.groups.yahoo.com/group/dysferlin/message/497 Hi Liam, Thanks for writing. I've changed your posting privileges so that you can post from now on without approval. I'm sorry to hear of your sister's Tue, 23 Jun 2009 23:31:07 GMT liambyrne35 http://health.groups.yahoo.com/group/dysferlin/message/496 http://health.groups.yahoo.com/group/dysferlin/message/496 Hello Everyone I have only just registered. My sister is 35 years old. We live in Ireland. She has experienced weakness in her leg muscles for the past number Wed, 10 Jun 2009 14:19:55 GMT MATHEW anas http://health.groups.yahoo.com/group/dysferlin/message/495 http://health.groups.yahoo.com/group/dysferlin/message/495 Soon we all be strong as Belgian bulls... http://www.acceleronpharma.com/content/news/press-releases/detail.jsp/q/news-id/116 Unfortunately no webcast.