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Muscular Dystrophy Message Board


Muscular Dystrophy Board Index


I have a very mild form, compared to others and wasn't diagnosed until I was 24 years old (I'm 25 now). I've always had contractures in my elbows, knees, fingers, wrists, ankles and hips since I can remember. Most of the doctors throughout my life dismissed the contractures stating that if they didn't know why I had them and that if they didn't bother me then I shouldn't worry. But they were bothering me....not my joints but putting extra strain on my muscles. Other than that, you can't tell anything is wrong with me just looking at me (besides that I walk stiff and the contractures, although they aren't that noticeable). My main symptoms are muscle burning and stiffness and it's mainly in my hips and upper legs (thighs). Also, I can't do certain things like cartwheels because of my contractures and lack of muscle in my shoulders. I started complaining a lot of problems when I was 14 years old though, just no one knew what was wrong. I don't use a wheelchair or a walking aid (yet at least). There are days when I just ache so much that it's hard for me to walk. I take a pill called Celebrex (pain reliever) when it gets too bad for me to handle but other than that I don't take anything.

Right now I started doing Beachbody's Insanity which is an extremely INTENSE workout. I didn't think I'd be able to do it because I don't react well to exercise but I'm going at my own pace and keeping up pretty well. The only thing I can say is that my knees are in HORRIBLE shape after starting the exercises. I should probably stop doing them but I like to feel healthy and in shape. I think my knees hurt because of all the contractures I have (hips, knees ankles etc.) and my body doesn't align properly when I do them even though I try my hardest lol.

What kind of test did you do exactly to get the diagnosis (blood test, muscle biopsy, clinical)? After seeing many doctors over the years I finally ran into a neurologist who specialized in muscles and tendons and after looking me over and asking me some questions did some research and ruled out other and finally pinpointed Bethlem Myopathy. He told me that if I wanted to know for sure if I had it that I would need a blood test or a muscle biopsy but that sometimes even those come back negative when they should be positive. So I am "clinically" diagnosed as having Bethlem Myopathy. He said having contractures the way I do is something somewhat "odd" for someone my age and that there aren't too many things out there with my specific symptoms. Anyways, I wanted to add that I've been gluten free going on 2 years and wanted to report that somehow it helps my tiredness that I feel, that's why I'm still sticking to it. There were days when I'd wake up so tired I'd cry because no one was helping me. I tried all different kinds of pills for "depression" etc. to help my tiredness but nothing helped until I went gluten free although I wasn't diagnosed with a gluten allergy. Something you may want to think about at least. I don't know if you have problems with tiredness or not??

I do have the plucked chicken skin on my arms and legs although it's not that noticeable unless I get a tan lol. Those Keloid scars/bumps don't sound fun AT ALL. I haven't noticed those on myself yet.

Before I started my exercises I worked with a Physical Therapist for a while to help my mobility and get me prepped for exercising. It was a major help for me. The only thing I've found that helps is the gluten free diet and stretching (like yoga and/or physical therapy).

I think there are some limited trials going on here in the US but not much news is developing from those just yet. I was going to join one but I needed to travel to another state for a couple days for it and I didn't have any time off of work so it didn't work out for me :(. I wouldn't have learned anything new anyways...they would have compiled the results and years later would have come out with the research.

I'm so glad that you decided to post on this forum. I feel like I never can find anyone who can relate to my symptoms. So glad there are still some people out there looking for others to chat with. :)





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