Hello everyone, my name is Christina Ray,39, and I live in S.E. Oklahoma. I FINALLY got my diagnosis yesterday at the MDA Clinic in Oklahoma City. I have...
Welcome to the group Christina. wondering how you got diagnosed, with biopsy or dna analysis? ... From: Christina Ray To: dysferlin@yahoogroups.com Sent:...
Hi christina  My name is Patty I'm 28 from Texas and was diagnosed last november with the same thing. Although i know what a bummer this is. keep your...
Just wondering if I registered correctly and if any one has gotten my original posting. Christinabelle Just wondering if I registered correctly and if any...
Christina, I am 56 will be 57 years old this year. I started having problems in 1985. I have gone through 2 biopsies and many tests and have not had a...
Hi Christina, I'm Brad, the group moderator. Welcome to the group. The reason people didn't get your post for a while is that for new member, I have the...
Hello everyone. I have been reading thru the group postings trying to get to know everyone a little. I couldn't help but notice that most of you are in your...
I have a couple of things I would like to say about being in a wheelchair. I have pushed my Dad around for years never realizing how much different the view is...
Hi everyone, I'm AJ, I'm 25 and I live in Wisconsin. I was diagnosed with limb-girdle dystrophy around 2002, and then later found out it was Myoshi distal...
AJ, At 33, I was having trouble coming up out of a knee bend. My grip was weak and stairs were beginning to be difficult. I joined an aerobics class and also...
Yes, it's me again checking to see if I'm posting to the message board correctly. I typed two emails on the group site earlier, but I'm not sure they got...
we get the emails Christina. welcome to the group AJ. I am 48 and still walking (slowly), stairs very dificult. I found swiming is the best for aerobic...
I posted this message at the group site, but decided to copy it and try sending in directly in an email. I have a couple of things I would like to say about...
Hello everyone. I have been reading thru the group postings trying to get to know everyone a little. I couldn't help but notice that most of you are in your...
It's been a while since my last posting. I had a muscle biopsy done, since my bloodwork came back inconclusive. The bipsoy also came back inconclusive....
I wish there was a real tangible way of getting support while living with this crap. I will be 37 next month and am wondering how in the world will I be able...
Kendra, I am so sorry you are going throught this. I went through the anger you are experiencing. Do you have a scooter or a wheelchair? I purchased a...
Hi Christina, Thanks for your posts. It is helpful to share observations. I think if you look in the archives, you'll see a post by me about the onset of my ...
AJ, Your onset and symptoms so far are just about exactly where I was at your age. I was diagnosed when I was about 22 and for many years my symptoms were...
Hi Sharon, That is interesting. My experience was quite different. Any kind of weight lifting seemed only to accelerate the atrophy, though light exercise,...
Hi Kendra, You are absolutely right about a lot of things. I feel quite let down by MDA too. Here in Boston there is no support group either and, when I ...
Josh, You are right. Whatever exercise we try, we must start out slowly to see how our body reacts. When I started aerobics, my symptoms were minimal. I am...
I have followed your group for about a year now because my 6 year old son has a difficult to diagnose form of MD. Although, I realize most of you did not have...
I Josh, Thanks for your kind words of support. I actually worked with my local MDA to start and facilitate a support group in the tri-state (MD, DE, PA) area...
HI Sharon, Thank you for your kind encouraging words. My friends all joke that I am the most optimistic person they know. lol I was having a bad day. My...
Hi Josh, Kendra, and everyone, I too would be interested in a real-time chat of some kind. Online or maybe phone, though I live in the UK these days and phone...
Thank you Sharon and Josh for sharing your own experience. Josh, I think I will take your advice and try not to think too much about the onset of symptoms in...
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