I began to have symptoms of dysferlin deficiency in 1981, and was given a laboratory diagnosis in 2000, after a protein test became available. Also in 2000, I...
BWilliams16@...
May 28, 2001 8:42 pm
2
Hi! I have been diagnosed with LGMD and live in Spain.I haven't a definitive diagnosis.I would be happy to share with you information. I've read about...
ew12366@...
May 28, 2001 11:06 pm
3
I too am striken with 'dysferlin deficiency', and am very happy to see this newsgroup for us and all others....Godspeed with wellness and strength to us...
jbayonne@...
May 29, 2001 1:15 am
4
At the American Academy of Neurology Meeting May 5-11, 2001 there were several papers on muscular dystrophies caused by dysferlin deficiency. Abstracts can...
BWilliams16@...
May 29, 2001 4:48 am
5
Thanks so much for organizing this group. I suffer from LGMD. I've noticed problems since 1993, but it wasn't until last year that doctors were able to...
Jamal Davis
gbmee_1999@...
Jun 3, 2001 2:17 pm
6
hi! I'm the second spanish in this group (It's not a bad average). I'm afected by a muscular dystrofhy since i was a child. Now I'm 29 years old and I haven't...
clavilenho@...
Jun 6, 2001 10:08 pm
7
thanks to María José for leading me to the site of the upcoming XVII World Congress of Neurology, to be held in London, 17-22 June The conference webpage is ...
BWilliams16@...
Jun 9, 2001 5:44 pm
8
I thought I would see what experiences others have had... When I first started to have symptoms (20 years ago) it seemed to be very difficult to find a...
BWilliams16@...
Jun 9, 2001 5:53 pm
9
... Hi Brad, and also to the rest of the group. For those who don't know me (who I guess is everyone except Brad), I'm a student doing research into dysferlin...
Daniel MacArthur
mesk125@...
Jun 11, 2001 10:27 am
10
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
11
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
12
As I discovered yesterday, the default in sending a reply to a message is to send it only to the author of the original message, not the group. To send it to...
BWilliams16@...
Jun 16, 2001 5:17 pm
13
While I realize that this forum is about dysferlin, I have a question about LGMD -- which I have. Does anyone know if there are any sort of exercises that...
Jamal Davis
gbmee_1999@...
Jun 26, 2001 5:13 am
14
(the first time I sent this message back to the author only and not to the board) Oops! Hi Jamal; Your question is very good one, and I've been asked that by...
BWilliams16@...
Jul 1, 2001 2:33 am
15
This was originally a reply to Jamal's message (13), but I (also) neglected to select the option to send it to the board: There is a website, rehabinfo.net,...
jerrywilliams2@...
Jul 6, 2001 5:30 am
16
Hi everyone; The following is a "preview" of a new pamphlet on distal MD being prepared by the US MDA. This was sent to me by Sharon Hesterlee, who invites...
BWilliams16@...
Aug 1, 2001 3:03 am
17
the dysferlin website has a new address: http://www.dysferlin.org the site still exists on the previous address for the moment (if the server is functioning,...
BWilliams16@...
Aug 27, 2001 5:08 am
18
Hello, My name is Vikram. My brother in India is suffering from Miyoshi myopathy since 1996. Several docs have tried and given up on any kind of treatment. We...
Hi Vikram, Welcome to the group. As far as the prognosis of Miyoshi myopathy goes, the symptoms are progressive, although rather slowly. Typically patients...
I am a final year student at Brighton University (UK), studying social science. For my dissertation I am investigating how individuals with Muscular Dystrophy...
Just wanted to say Hi to everyone here. I'm not sure yet but we are testing for LGMD Type2B. I've had a diagnosis of Polymyositis since 1997 and saw a...
Welcome to the group, BillG. I appreciate how frustrating it must be awaiting a diagnosis--it certainly was for me. From what I've read and also heard from...
I just came across the following abstract, which reports a way of diagnosing dysferlin deficiency from a blood sample. The caution is that this test still...
I am so glad to know that you all are here. This has been such a long, emotionally and physically draining ordeal for me and my family. I was told 2 weeks ago...
Welcome to the group, Kendra. I can definitely relate to the thoughts and feelings you express. I imagine you are kind of overwhelmed right now trying to come...
Hi ! I've been diagnosed with type 2b for about a year now and I hope to learn as much as possible. Info is sparse on 2b and myoshi. I did learn quite a bit...
Welcome New Guy-- Brad Williams is usually online to greet newcomers to this list, but he has been incapacitated recently (I understand that he is on the mend...
Hi again folks and thanks for the greeting Sharon! Please forgive me for not pointing out that my name is Dave and I am the inquisitive type. To that end, I'd...
... I've also read that the number is very low at "end stages" . What's the scoop? CK (or CPK) is a muscle enzyme which leaks into the bloodstream when muscles...
Hi everyone, and thanks for filling in, Sharon! Well, I managed to fall down last week and break my leg...specifically, the upper portion of the tibia. I...
