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Old 08-12-2011, 03:19 PM   #31
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Re: Does anyone have Bethlem Myopathy?

Quote:
Originally Posted by mistyice26 View Post
The hot tub is too nice. I can't stay in too long though, I get sleepy

I'm stiff too and I'd say my pain is a 7 on a scale of 1-10 today. My arms are REALLY hurting. I can't bend them without my tricep burning like crazy. Is your diagnosis not as rare as mine???
I know, I get tired sitting in the bath lol

That stiffness sounds bad I don't know what to suggest, I suppose when all else fails you just have to ride it out til it subsides Hope it feels better soon though

I'm not sure how rare this Laing Distal Myopathy is; I haven't found much about that online; I think it said that it was unknown as to how rare it it as it was only really named in 2004! But I think Bethlem is known to be really rare.

 
Old 08-15-2011, 06:45 AM   #32
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Re: Does anyone have Bethlem Myopathy?

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I know, I get tired sitting in the bath lol

That stiffness sounds bad I don't know what to suggest, I suppose when all else fails you just have to ride it out til it subsides Hope it feels better soon though

I'm not sure how rare this Laing Distal Myopathy is; I haven't found much about that online; I think it said that it was unknown as to how rare it it as it was only really named in 2004! But I think Bethlem is known to be really rare.
Yeah, I just had to ride it out. I took my pain pills and they did help me a great deal. I just started feeling better yesterday though! That took forever lol.

Yeah I hadn't heard of Laing Distal Myopathy until you mentioned it to me. I bet it's along the same lines as Bethlem since they are similar, maybe at least. How did your weekend go?

 
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Old 08-15-2011, 09:29 AM   #33
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Re: Does anyone have Bethlem Myopathy?

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Originally Posted by mistyice26 View Post
Yeah, I just had to ride it out. I took my pain pills and they did help me a great deal. I just started feeling better yesterday though! That took forever lol.

Yeah I hadn't heard of Laing Distal Myopathy until you mentioned it to me. I bet it's along the same lines as Bethlem since they are similar, maybe at least. How did your weekend go?
Hi

I had a really good weekend thanks!
Glad you're feeling better Oh before I forget, I got something really good for when my lower back gets stiff and sore; it's called 'Waist Support'- 'compressive support for the waist' and it is like one of those grip things you get for your knee or arm to support it; like a flexible material that velcroes at the front. Anyway I put it on and it was really good, my lower back felt so much better as it's been stiff and hurting again a bit. I got mine from the local chemist/pharmacy really cheap. Just thought I'd share that with you as it made my back feel so much better! I'm sure you've seen them before lol

Hey I had never heard of Laing distal Myopathy at all as well until I was told I may have it and got the test, I thought I had heard of all forms of Md but obviously not lol.

Did you have a nice weekend?

 
Old 08-15-2011, 09:39 AM   #34
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Re: Does anyone have Bethlem Myopathy?

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Originally Posted by Clairejp View Post
Hi

I had a really good weekend thanks!
Glad you're feeling better Oh before I forget, I got something really good for when my lower back gets stiff and sore; it's called 'Waist Support'- 'compressive support for the waist' and it is like one of those grip things you get for your knee or arm to support it; like a flexible material that velcroes at the front. Anyway I put it on and it was really good, my lower back felt so much better as it's been stiff and hurting again a bit. I got mine from the local chemist/pharmacy really cheap. Just thought I'd share that with you as it made my back feel so much better! I'm sure you've seen them before lol

Hey I had never heard of Laing distal Myopathy at all as well until I was told I may have it and got the test, I thought I had heard of all forms of Md but obviously not lol.

Did you have a nice weekend?
That's great to hear about your weekend! My arm was hurting but we went to a concert (the band Bush) on Saturday night and I had a lot of fun. It was a great concert.

Ooo that's really good information. I am going to have to buy one of those because nowadays my lower back stiffness/pain is one of my main complaints. I think I know just what you are talking about. I am going to have to check my local drug store to see if they carry them. Thank you SO much for sharing that with me!

I am going to see my physical therapist for the second time tonight. I will explain to him what happened this past week to see if there was any kind of exercise or stretch I could do to help that. Obviously the answer is NOT to just give up on working out. I need to do something at least. We'll see what he has to say and I'll share with you.

Yeah I thought I had heard of all the forms too until you mentioned that one. Hmm...there are so many unknowns and new things out there they are just now starting to discover.

 
Old 08-15-2011, 11:04 AM   #35
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Re: Does anyone have Bethlem Myopathy?

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Originally Posted by mistyice26 View Post
That's great to hear about your weekend! My arm was hurting but we went to a concert (the band Bush) on Saturday night and I had a lot of fun. It was a great concert.

Ooo that's really good information. I am going to have to buy one of those because nowadays my lower back stiffness/pain is one of my main complaints. I think I know just what you are talking about. I am going to have to check my local drug store to see if they carry them. Thank you SO much for sharing that with me!

I am going to see my physical therapist for the second time tonight. I will explain to him what happened this past week to see if there was any kind of exercise or stretch I could do to help that. Obviously the answer is NOT to just give up on working out. I need to do something at least. We'll see what he has to say and I'll share with you.

Yeah I thought I had heard of all the forms too until you mentioned that one. Hmm...there are so many unknowns and new things out there they are just now starting to discover.
I'm jealous of you seeing Bush!! How were they live? I bet they were really good!
Yeah I thought you would know what the back thing is lol,I don't know what they're called lol. I kept going to call it a back brace but it's not is it?
I hope it goes well with your physio tonight I'm starting some physio soon finally! I hope he helps you out with some stretches etc to help you.

 
Old 08-15-2011, 11:10 AM   #36
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Re: Does anyone have Bethlem Myopathy?

Bush was AWESOME! It was one of the best concerts I've seen.

I think I would call it a back brace too...I'm not sure of any other names it could be. Thanks! I hope it goes well too. It should, the doctor is REALLY nice. Yayyyy...I'm glad you are starting some soon too. Let me know how that goes for you. I'm hopeful that he can help me out. I have to see him 3 times this week and 3 times next week as well. Then we can bump therapy down to less times per week.

Last edited by moderator2; 08-15-2011 at 02:36 PM. Reason: please do not post a commercial website

 
Old 08-15-2011, 12:24 PM   #37
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Re: Does anyone have Bethlem Myopathy?

It makes such a difference when you have a nice doctor Hope it goes well! Let me know how it goes!

Last edited by moderator2; 08-15-2011 at 02:35 PM. Reason: please do not post a commercial website

 
Old 03-29-2012, 12:19 AM   #38
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Smile Re: Does anyone have Bethlem Myopathy?

I have Bethlem Myopathy! I am 22, Australia! How about you?

 
Old 03-29-2012, 11:25 AM   #39
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I have Bethlem Myopathy! I am 22, Australia! How about you?
Awesome! It's been so long since anyone's posted in here. I am 25 from the U.S. Tell us more about yourself...how long have you had BM and what are your symptoms?

 
Old 03-29-2012, 06:59 PM   #40
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Re: Does anyone have Bethlem Myopathy?

When I was 2 I was diagnosed with 98% accuracy of Spinal Muscular Atrophy. Over the years my body was getting tighter and weaker and i began to notice alot of weird things! So when I was 18 I went to double check the diagnoses after talking to my nuerologist and when I was 20 the results came in that they had originally diagnosed me incorrectly and It was shown at 100% accuracy that I have Bethlem Myopathy!!!

So for the past 2 years I have been doing lots of research and several other things trying to learn about this rare disease!!!

Only 2 people have BM in Australia, 1 being myself. The other girl just wanted to live her life and not really talk to me about it. So I went my own way.

I have contractures in my elbows, knees, fingers and a tiny bit in my hips. I have the Plucked chicken skin look on my upper arms and sometime they show up around other places but it really doesnt bother me because its not that noticable. I take a long time to heal if i have a large cut or wound. I recently had a car accident and it took a couple of months for my head wound to heal. All my scars from operations when I was little etc. Are still clearly visable.

I recently noticed these lumps on the back of my shoulders and went to a dermatologists. This also relates to the disease. They are called Keiloid scars. They are lumps of collagen, people with BM produce large amounts of this and that is why i have lumps of collagen. its a bit weird actually haha.

They can be injected with steroids etc. but after a while I stopped cause it was just too much to always have injections into them, cause it was quite painful. But i will be going back again soon because they have become inflammed again.

Ummm what else! haha Well I am in a wheelchair, because it took so long to realise what I had they decided to let me sit and pretty much just deteriated from that point. they believe with rehab i can loosen the contraction and build muscle strength. Dieting is a big part of this.


Anyways I could babble on all day!!! HA hA ha, tell me about yourself, what do you know? do you have similar symptoms? have you found anything that helps?

Is there anything going on with this in the US??? Australia is pretty bad for new discoveries!!! ahahah

Im so glad i found this forum!!!

sorry for the long read!!!

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Old 04-02-2012, 09:44 AM   #41
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Re: Does anyone have Bethlem Myopathy?

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.

 
Old 04-04-2012, 11:39 PM   #42
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Re: Does anyone have Bethlem Myopathy?

Wow yes it definetly sounds the same as what ive got! I dont know if i mentioned it in my previous email, but im not meant to be in a wheelchair, but by the time we figured out what i had my muscles were too week to walk so now i need to rebuild them and will be able to walk if my contractures dont hold me back. So besides from the walking part, we definetly have the same disease!!!

I was diagnosed through a skin biopsy, similar to a muscle biopsy but a lot less intense. they pretty much numb a part of your body, in this case they did it on my lower arm. and they cut a circle of skin out then stitch it back up. It doesnt hurt, i watched the whole thing! hahaha

Then they took the skin to grow over the east of Australia, and it took about 2 years to grow then i received the results. A muscle biopsy is much quicker.

I have also had a muscle biopsy when I was like 3 or 4. but back then they werent familiar with Bethlem Myopathy so they diagnosed me with kind of having something else, but werent 100% sure about it!

You should definetly get tested, but then again you sound like you have all the symptoms so it would probably be a waste, but would put your mind to rest!

I have physio every week and if I could afford it i would have it everyday!!! Unfortunatly money doesnt grow on trees! But I would have stretches as often as you could because when I was in a rehab centre for this, My leg contractures loosened a reasonable amount just by stretching them with weights every day for 5 weeks!!!

Because I am not walking Im not really in any pain, except for when my contractures tighten cause they need to be stretched or my back and neck hurts at times. But nothing that Nurofen or Panadol doesnt fix!!! Or some awesome heat packs! haha

Yes the same thing is with me, Every clinical trial you have to travel. And Australia just doesnt have anything so its all international, America, UK and Italy!!!

But there is this one similar to what you said in Slat Lake City! And he just wants permission to survey me and look through all my files! So its pretty easy, so im gonna sign the consent form for him!

If i find anything worth wild ill let you know!!!

Its so nice to be able to talk to someone!!!

 
Old 04-09-2012, 06:51 AM   #43
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Darn it....I just wrote a really long post but my browser messed up and erased it grrrr...

That's really too bad that they waited so long to find your correct diagnosis that you needed a wheelchair. I'm sure that if my neurologist hadn't sent me to physical therapy that I'd eventually need a walking aid in about 10 years or so.

Odd question but....do you ever feel like your legs need stretched when you are laying in bed? That's when I notice it the most like my hamstrings/hip flexors need stretched so I end up contracting them off and on throughout the night while in bed. I didn't know if that was something just unique to me. I don't know why I notice it the most while in bed.

Wow that skin biopsy sounds really neat although it takes so long to get the results. I've never heard of that as being an option to finding out if I have this disease or not. My neurologist told me about taking blood and sending it away to a lab to check the DNA structure or something and also about a muscle biopsy. He said the muscle biopsy is obviously more invasive because they have to cut into you and take a sample of muslce and then stitch you back up. He said that my insurance would probably not cover either option but would probably cover more of the DNA blood test option though. I've been lazy since being diagnosed last year. I think it's partly because I've spent SO MANY years looking for what was wrong that I'm satisfied, for the time being, with what he told me. Now I just need to gather some money together and try to get one of those tests done.

Yeah I wish I could afford physical therapy everyday too. I can barely afford it but once a week and now my insurance has changed again and it no longer covers things the way it used to so now I don't go at all. But, when I was going, we did some stretching with weights too and the therapist measured my contracture degree and it was definitely getting a lot better over time. It actually didn't take long at all. I wish I could still go see him. I remember him having me hold a weight in my hand while letting my forearm hang off the edge of a counter to try to straighten my elbow contractures. It hurt so bad after holding it there for 15 minutes or so. I never did it again after that lol.

I am in pain a lot of the time. Mostly it's pain because my legs feel sore and heavy. It's almost like when you get sick and have the flu and your body just aches. That's really good that you don't feel pain most of the time though! I need to try the heat packs, I haven't done that yet.

That study in Salt Lake City sounds easy enough of all you have to do is sign a form to let the person review your file. Yes, please do let me know if you hear of anything worthwhile. This is such a rare disease.

It really is so nice to be able to talk to someone. It's so hard when NO ONE can relate to you. You don't know what to tell your workplace when you are feeling bad and just can't make it to work, ya know? So glad you found this site and decided to post on it!

 
Old 04-09-2012, 07:32 AM   #44
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Re: Does anyone have Bethlem Myopathy?

Wow that's surprising he didn't suggest a skin biopsy! But then again different countries do different things.

Yes I always feel like my legs need to be stretched, sometimes my arms too, probably cause mine are quite tight. I think it's because you are relaxing the muscles but sometimes it's also because they actually need to be stretched out.

I bought these weight like sand bag things. Just heavy weights that you can lay on your knees, I think people usually wrap them around their ankles to get a work out when walking. I put these on my knees for 15 minutes if I feel like I need a stretch! It isn't a great feeling, its a strong stretch but it releases the contracture a bit and makes the stretch pain go away!

It's kind of the same here, I can only have physio once a week cause it's pretty expensive but my health cover insurance covers a portion of it. So I bought all these different weights for both arms and legs, hand exercise gels, kinda like tough play dough. I've had hand splints and elbow splints made up to give a long stretch when I feel like wearing them. This way I can stretch and exercise by myself with out having to fork out lots of money!

You should give the weights a go when you get sore, I know it's not nice but it does help!

Yer I don't think you need to have any tests, it's pretty clear you have Bethlem myopathy!

The thing I find the hardest is actually trying to do exercise or stretch in my own time, cause I can never seem to find the time!!!

 
Old 04-20-2012, 08:29 AM   #45
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Re: Does anyone have Bethlem Myopathy?

I'm sorry it's taken so long for me to reply to you! I didn't see the notification that a new post had come through....

Yes, that would have been nice if he would have offered a skin biopsy. But you're right, probably different countries do it differently.

Do you ever find that your shoulders (upper body) are weak? I've noticed as I've been doing exercises that my upper body is completely weak almost like there is no muscle there.

Hmm maybe I could call my physical therapists office and ask him about the weights thing.....

Have you found that the splints have helped at all? I would like to get tested just for peace of mind but I know in my heart that BM is what it is. Everything matches perfectly.

Lol I could never find the time either when I was going to the physical therapists. I do exercises now and find the time but I think that's because I know I am trying to lose inches too (not just work on my contractures). I do plenty of stretching with my exercises though. I think I may have overdone my workout last night though. My whole body is shaking and hurting today and I just feel like getting sick from exhaustion and I'm SO sleepy. Blah. But it's Friday at least! How are you doing lately?

 
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