The CPK thing is a problem. What if we REALLY had a heart attack? As for the allergies, I'm suffering terribly too. What's wierd is that we all seem to be...
Hi Friends, I am 25 male with FSHD. As of now I am quite OK. Able to do most of the things in daily activities almost as normally as anybody else. But still...
Siva, one of the researchers at our FSH conference in Boston last summer answered a question put to her by my wife, saying that IF the research into MYO-029...
Well, they told me that a cure would probably come along soon - more than fifty years ago. If I was a young guy I think I would be more concerned about the...
I just came across this site: http://celldyne.net/ http://www.waynegroup.net/index2.html This company has developed a natural myostatin inhibitor. I already...
Amy, one more problem here, and maybe further north where Steve lives, is the giant wild-fire in southeast Georgia. The smoke from that fire is creating a...
A truer word was never spoken, John. Unfortunately... But there is a great mystery for me: was he sincere, this scientist from FSH conference in Boston, when...
Am 71 year old male, FSH since 21 yrs old, in nursing home last 6 years. Every year while there develop Bronchitis, turns into pneumonia, happens every year 2...
Sounds to me like the nursing home KNEW your relatives could have sued them for lack of proper care if you HAD died, and understanding how close you came must ...
Alla, I am mystified as to why you would question the sincerety of one of our researchers? This woman is working very hard for us! Paul ... a great ... ...
OMG Silvio. What a terrible experience you went through. I am glad that you came through it with strength and fortitude restored. Feeling good, or at least...
-Your situtations of Pneumonia is not unsual, considering where you live. Most nursing homes have a high incident of pneumonia due to the close quarters. ...
Frogspor, personally I'd wait for the results of the MYO-029 trail -- the researchers should be reporting soon. By testing in normal healthy people this...
you have to remember something about FSHD. Alot of us were never diagnosed till 20 years ago when the medical establishment started to diagnose the problem....
Those of us living in Florida and other overly sunny states don't have to worry about D....other than being careful not to take too much, thereby causing ...
-no, i do not spend too much time at a computer--only check e-mail every few days--limit my time. i am aware of carpal tunnel syndrome-- that's no twhat it...
Hello Everyone, I am a 49 yr. old female living with FSH. I was diagnosed at 14. The progression caused mr to begin using a scooter in 1987. I have severe ...
-Hello Iam a 51 yr old female with FSH-Iwas an ER Nurse for 20 yrs and stopping about 7 yrs ago- About 7 yrs ago I started falling alot more and need to change...
Hi Karen, Welcome to the group. There are lots of people here that can relate to your same situation, just maybe a little different degree. My daughter has...
Hi Karen: Welcome to the group. Ive had FSH for 50 years. Also have lordosis and scoliosis over the years. In beginning it was not so bad, but due to ...
OMG, double x. All those problems and yet you are still working. What an inspiration you are to us as well as those around you. I am sorry for all your pain...
Welcome Karen. Good to have you with us. Please come back often. I have what I consider to be mild lordosis with some pain that is controlled with Bufferin. ...
... Hi Karen, I was diagnosed Just last year Sept 2006. I am 43. I have found from all the coversations here I am so far much better off right now then others....
More about Dr. Groopman on NPR: http://www.npr.org/templates/story/story.php?storyId=8892053 Paul, the listener ... The ... on ... difficulties ... making ... ...
I have always dreaded old age. I cannot imagine anything worse than being old. [How awful it must be to have nothing to do all day long but stare at the walls...
I'm not sure but I think there are probably a number of people on the list from the New England area. My husband and I are taking one of our "dream trips" this...
Bee: Several years ago, TLA and I were returning from Nova Scotia via New England. We failed to take into account that it was high season for the "Peepers,"...
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