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Old 05-29-2011, 01:00 PM   #1
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Does anyone have Bethlem Myopathy?

Hi I'm looking for others with Bethlem Myopathy to talk to, share experiences etc.
Thanks
Claire x

 
Old 08-10-2011, 07:26 AM   #2
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Re: Does anyone have Bethlem Myopathy?

I feel alone. No one around me understands this. How old are you and where are you from?

Melissa

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Old 08-10-2011, 07:51 AM   #3
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Re: Does anyone have Bethlem Myopathy?

Hey Melissa

I recently found out it is Laing Distal Myopathy and not Bethlem!
I still am a bit in your shoes and it's nice to be in touch with someone that understands.

Claire x

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Old 08-10-2011, 08:12 AM   #4
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Re: Does anyone have Bethlem Myopathy?

Would you mind describing your symptoms? Are they similar to Bethlem? I have contractures in my fingers, elbows, hips and knees and feel VERY tired all the time with significant muscle weakness. These are the major things I've encountered since I was 14.

Quote:
Originally Posted by Clairejp View Post
Hey Melissa

I recently found out it is Laing Distal Myopathy and not Bethlem!
I still am a bit in your shoes and it's nice to be in touch with someone that understands.

Claire x

 
Old 08-10-2011, 08:23 AM   #5
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by mistyice26 View Post
Would you mind describing your symptoms? Are they similar to Bethlem? I have contractures in my fingers, elbows, hips and knees and feel VERY tired all the time with significant muscle weakness. These are the major things I've encountered since I was 14.
They are pretty similar to Bethlem; My first symptoms as a child were contractures of the Achilles tendons and of the fingers. I too have quite a bit of fatigue which I think happens in most of the muscular dystrophies; I only get it bad if I really over-do it.

Here's a link about Laing Distal Myopathy:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077563/?tool=pubmed

Claire

 
Old 08-10-2011, 08:47 AM   #6
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by Clairejp View Post
They are pretty similar to Bethlem; My first symptoms as a child were contractures of the Achilles tendons and of the fingers. I too have quite a bit of fatigue which I think happens in most of the muscular dystrophies; I only get it bad if I really over-do it.

Here's a link about Laing Distal Myopathy:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2077563/?tool=pubmed

Claire
Hmm....I took a look at that webpage as well as a couple others...they are very similar. I don't have weakness in my fingers or really in my neck either (yet at least). I wonder if that is the major difference.

I usually only get mine bad when I really over-do it too. I've had mine since I was 14 (or that's the earliest I noticed pain symptoms). I've had the contractures all my life. What do you take for pain? I take Celebrex (only as needed). Have you had a baby yet? I'm curious as to if I will be able to have a baby naturally with my hip contractures.

 
Old 08-10-2011, 09:00 AM   #7
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by mistyice26 View Post
Hmm....I took a look at that webpage as well as a couple others...they are very similar. I don't have weakness in my fingers or really in my neck either (yet at least). I wonder if that is the major difference.

I usually only get mine bad when I really over-do it too. I've had mine since I was 14 (or that's the earliest I noticed pain symptoms). I've had the contractures all my life. What do you take for pain? I take Celebrex (only as needed). Have you had a baby yet? I'm curious as to if I will be able to have a baby naturally with my hip contractures.
I had symptoms from about age 7 but was only diagnosed clinically at age 20.
I don't really take much pain medication as I have really bad digestive/acid problems at the moment and it seems to make it worse. I tend to use ibuprofen gels that you get in a tube and rub directly on the spot that hurts (usually my neck lol) I also sometimes sit with a hotwater bottle on my back or get a hot bath. It doesn't get rid of the stiffness and that completely but it all seems to help a bit!
I haven't had any children yet but I had the same concerns as you and was also worried about the extra weight etc and legs giving way.

 
Old 08-10-2011, 09:11 AM   #8
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Re: Does anyone have Bethlem Myopathy?

I also have GERD and take medication for that (acid reflux). I haven't noticed that the Celebrex makes my GERD any worse though. Although I only take my pain meds on the REALLY bad days. I don't think I've heard of those ibuprofen gels but I will look for them! I notice that warm water helps me too. Well...GOOD LUCK! I guess we'll find out about having kids soon enough .

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Old 08-10-2011, 09:26 AM   #9
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Re: Does anyone have Bethlem Myopathy?

Thanks!
Do you mind me asking what caused your GERD? If you know?
I've had this acid reflux for 2 years and it has sent me insane sometimes!
I often wonder if it could be neuromuscular in origin? I'm having an endoscopy so the doctor's can maybe figure out what's going on down there lol


Claire

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Old 08-10-2011, 10:05 AM   #10
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by Clairejp View Post
Thanks!
Do you mind me asking what caused your GERD? If you know?
I've had this acid reflux for 2 years and it has sent me insane sometimes!
I often wonder if it could be neuromuscular in origin? I'm having an endoscopy so the doctor's can maybe figure out what's going on down there lol


Claire
No, I don't mind at all! They don't know what caused my GERD. They told me that some people just get it and some people don't. I do have gluten intolerance too (not an allergy). My GERD has been somewhat more alleviated by it. But I still need medicine. I think they've said in general that it's a loose "muscle" that open/closes when it's not supposed to and allows food up through the esophageous. Now that you mention that, that is a very good thought......maybe the muscle is weak because of a "neurmuscular disease?" I had never thought of that before. Please, if you remember, let me know what they find on your endoscopy.

P.S. The GERD drives me insane too when it flares up. It feels like there is literally a hole burning in my throat.

 
Old 08-10-2011, 10:23 AM   #11
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by mistyice26 View Post
No, I don't mind at all! They don't know what caused my GERD. They told me that some people just get it and some people don't. I do have gluten intolerance too (not an allergy). My GERD has been somewhat more alleviated by it. But I still need medicine. I think they've said in general that it's a loose "muscle" that open/closes when it's not supposed to and allows food up through the esophageous. Now that you mention that, that is a very good thought......maybe the muscle is weak because of a "neurmuscular disease?" I had never thought of that before. Please, if you remember, let me know what they find on your endoscopy.

P.S. The GERD drives me insane too when it flares up. It feels like there is literally a hole burning in my throat.
I know, I hate it, when it gets really bad I feel like I have a big lump in my throat and I hate the feeling of acid/food coming up all the time

I will definitely let you know what happens with the endoscopy
Hopefully they will find out what's wrong. Hey you know what's weird, I also have a really bad Gluten intolerance! I had a test for Coelic disease about a year ago which came back negative but I had been off foods with gluten in for 6 months so don't know if that affected it? I don't want to force myself to eat bread etc just to get a positive result because it made me feel so ill eating foods with gluten in.
I often wonder if the years of eating foods with gluten damaged my stomach lining and maybe that's why I now have this acid reflux problem?

 
Old 08-10-2011, 11:21 AM   #12
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by Clairejp View Post
I know, I hate it, when it gets really bad I feel like I have a big lump in my throat and I hate the feeling of acid/food coming up all the time

I will definitely let you know what happens with the endoscopy
Hopefully they will find out what's wrong. Hey you know what's weird, I also have a really bad Gluten intolerance! I had a test for Coelic disease about a year ago which came back negative but I had been off foods with gluten in for 6 months so don't know if that affected it? I don't want to force myself to eat bread etc just to get a positive result because it made me feel so ill eating foods with gluten in.
I often wonder if the years of eating foods with gluten damaged my stomach lining and maybe that's why I now have this acid reflux problem?
Thanks!
You do?! That's crazy! I have been tested for Coeliac disease several times (even before I went gluten free 2 years ago) and they always came back negative. But after I tried going gluten free I immediately felt better after about a week. I used to get a really bloated stomach after eating wheat. I feel so much better digestively AND I don't feel as tired all the time. I wonder if the gluten intolerance was depleting me of vitamins and minerals because it wouldn't let me absorb all of the nutrients in foods. I still get tired sometimes now but it seems more geared from something muscle related than anything else. But anyways, I've heard that A LOT of times you don't get a positive result from the blood test anyways and then again, some people are just gluten intolerant and not full blown coeliac. That very well could be why you have acid reflux too. I think they are strongly linked that if you are gluten intolerant/celiac then you also usually have acid reflux. I never had an endoscopy done of my stomach but heard that if you've been gluten free then it still won't show signs of inflammation in the villi in your stomach. So I just decided to skip the test and eat how I feel best. If I didn't think it helped me that much I would keep eating wheat but this has been a major life change for me and I am so much happier for it. I hope they can help you too!

 
Old 08-10-2011, 01:30 PM   #13
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Re: Does anyone have Bethlem Myopathy?

Yeah I hope it get's sorted, if I know what's going on then I'm hoping I'll be able to figure out how to sort it out.

I wasn't bothered about being formerly diagnosed with coeliac either; I did an elimination diet and it is definitely wheat/gluten that causes me big problems. Same as you I get really bad bloating etc and I ended up anaemic, but that's all sorted now. The only thing is since I've had this acid reflux I've had the big bloating again so I've been wondering whether I have some other intolerance as well? Maybe soya or something? Anyway hopefully I'll find out soon! I'll keep you posted, and like I said feel free to post here and we can share our woes

Claire

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Old 08-10-2011, 01:55 PM   #14
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by Clairejp View Post
Yeah I hope it get's sorted, if I know what's going on then I'm hoping I'll be able to figure out how to sort it out.

I wasn't bothered about being formerly diagnosed with coeliac either; I did an elimination diet and it is definitely wheat/gluten that causes me big problems. Same as you I get really bad bloating etc and I ended up anaemic, but that's all sorted now. The only thing is since I've had this acid reflux I've had the big bloating again so I've been wondering whether I have some other intolerance as well? Maybe soya or something? Anyway hopefully I'll find out soon! I'll keep you posted, and like I said feel free to post here and we can share our woes

Claire
I didn't end up anemic, somehow. But yes I still have bloating and I KNOW it's due to soy. I stay away from soy things and my bloating pretty much goes away. I should have mentioned that before. I lactose intolerant, gluten intolerant and soy intolerant. Those are the MAJOR things I've found.

Today I was feeling pretty bad. I started exercising last night and although I know you'll be sore the next day, my arms were shaking and I could barely move them, same with my legs. They didn't just hurt, there was muscle weakness too. I didn't even work out that hard. My shoulders are probably the weakest part of my body. I dunno why that is though. Anyways, that's my "woes" for today. I don't usually feel this bad. My muscles feel like they are "burning" all the time like I am continuously exercising and also just achy. At least that's how I've described it to doctors. How do you describe your muscle pain?

 
Old 08-10-2011, 02:18 PM   #15
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by mistyice26 View Post
I didn't end up anemic, somehow. But yes I still have bloating and I KNOW it's due to soy. I stay away from soy things and my bloating pretty much goes away. I should have mentioned that before. I lactose intolerant, gluten intolerant and soy intolerant. Those are the MAJOR things I've found.

Today I was feeling pretty bad. I started exercising last night and although I know you'll be sore the next day, my arms were shaking and I could barely move them, same with my legs. They didn't just hurt, there was muscle weakness too. I didn't even work out that hard. My shoulders are probably the weakest part of my body. I dunno why that is though. Anyways, that's my "woes" for today. I don't usually feel this bad. My muscles feel like they are "burning" all the time like I am continuously exercising and also just achy. At least that's how I've described it to doctors. How do you describe your muscle pain?
Hey I don't want to come across patronising or anything when I say this but you should be careful how much exercise you do; what type of exercise do you do? With muscle diseases I think you have to be really careful not to over-do it but at the same time keep the healthy or stronger muscles active and do gentle stretches or maybe swimming etc. I know that burning feeling you are talking about and I get it when I've gone over my limits Have you been able too see a physiotherapist or anything? I'm waiting to see one at the moment.
The muscle pain I get is the same as you; burning feeling mainly in shoulders and legs if i do too much. I sometimes get pain from being really stiff; mainly in legs. But again, it's usually if I've done too much I think.
Thanks for the info about intolerances, I think I might try cutting soy out for a bit and see if it does anything

 
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