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Old 05-10-2013, 11:06 AM   #1
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RussW HB User
Anyone with confirmed lgmd?

I was just wondering if there was anyone here with confirmed lgmd that could maybe tell me other than the weakness what are some of your other symptoms. Any stomach or vision problems? Any ear ringing or how about just your overall feeling?

 
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Old 05-18-2013, 10:15 PM   #2
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Re: Anyone with confirmed lgmd?

Hi RussW--I have stomach and slight vision problems but I don't relate that to my LGMD. I haven't been diagnosed but believe I have diverticulitis, so I have had to change my diet. Recently, I have developed neck pain that travels through my shoulder down into my elbow. That could be due to ergonomic issue with sitting at a desk all day and not being very strong in the shoulders and neck. I have always had ringing in my ears (tinnitus)and it has gotten worse in the last year. I am in my forties now and find myself running out of energy by early evening. Mornings I am usually very sore and stiff. In my experience with this disease is that most everyone has slight different symptoms or peculiararities of LGMD.

 
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Old 05-23-2013, 06:48 PM   #3
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Re: Anyone with confirmed lgmd?

hello.... I myself don't have lgmd, but my husband does. his started 4 years ago when he was having pain in his hips... they treated him for bursitis. but when there was no relief they did some bloodwork, which revealedvery high cpk levels.... obviously u know what those are. anyhow first they said lgmd 2b which is lack of dysferlin....dna test ruled that out. now we're being dna checked for ANO5 gene... whatever his is, it's affected his legs, and biceps the most..... he also had the myoshi myopathy along with it so he can't stand on his tip toes or walk on his heals.... the myoshi is affecting the distal muscles.... so it's not confirmed yet, and it takes forever it seems... we've been dealing with this for 3-4 years now.

 
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Old 05-26-2013, 10:00 AM   #4
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RussW HB User
Re: Anyone with confirmed lgmd?

Thanks for the responses, I was just curious about how everyone else was affected. I will give you a little about my case, I am a 40 something year old male we knew something wasn't right at around the age of 6 after my teachers recommened I see a doctor. After seeing a neuro he said it's probably some mild type of lgmd. I couldn't run as fast as the other kids or just wasn't as strong.

I went throug the next 25 years pretty uneventful. Then around the age of 30 the seemed to drop out the weakness progressed, began falling and can't get back up, developed a-fib, double vision, stomach issues mostly constipation, tinnistus and a whole list of other stuff that seems to wax and wane. I have seen three neuro's and have had most of the labs and tests two or more times. They have always came back normal or most consistent with------but inconclusive . I'm about 10 years into this deal with no answers!! The mental part of not knowing has gotten about as bad as the physical part of it

 
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Old 06-20-2013, 06:21 PM   #5
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Re: Anyone with confirmed lgmd?

Hi Russ, I have LGMD, and my beginnings were similar to yours. I remember not being able to climb the stairs to my grandmother's apartment when I was 4, and by that time, every time I tried to run I fell. I didn't get diagnosed until I was 19 or 20, but the neurologist just told me I had MD and wouldn't live more than 5 more years. (He was wrong, I'm 54 now).

I was always trying to be active, so I ended up on crutches by the time I was 17. To further complicate things, I had a spinal cord injury at 24 (C5/6) and lost most of the use of my arms and hands. (I was an auto mechanic and had a bad fall - one of the first women in my area and the first we knew about who also used crutches). After 8 months of rehab, I started getting involved in wheelchair sports and was able to build up some of my other muscles.

LGMD has many types, according to my doctor. He told me that some people lose muscles quickly (I'm one of them) and others much more slowly, even to the point of not realizing they have it. If you have an injury to a muscle, it doesn't always heal.

The best thing for me was to find a local clinic that knows about MD. I met other people at mine who have different types of MD and some of us became really good friends who support each other when needed. A few of us here have service dogs - mine can just about turn me over in bed (we're still working out the kinks). The doctors at these special clinics are very knowledgeable (at least the ones near me) and they're so helpful! They helped me get my first service dog. They also helped pay for my leg braces and wheelchairs a few times. (You may not need them)

It is life changing, but you can learn how to pace yourself (something I often forget to do). There are a lot of options out there - sports, where other people with disabilities teach you how to use the good parts of your body; vocational educational services that help train you for a new job (I went from mechanic to lawyer); and so many items to help with everyday living, like thick handled utensils, service dogs, reachers for dropped items. Good luck!

Last edited by McGrewsmom; 06-20-2013 at 06:25 PM.

 
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Old 07-01-2013, 08:21 PM   #6
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Bjorie HB User
Re: Anyone with confirmed lgmd?

I also have LGMD2I. I'm 55 and was diagnosed when I was 33. My mobility has changed dramatically is the last 10yrs but I also push myself to do a lot of activities. That can be good or bad. I have never had ringing of the ears, stomach or eye problems. My overall feeling is lots of muscle pain, (but then again I push too hard), especially in the morning. Right shoulder pain because I sleep on my right side and can't roll over without getting up out of bed so I tend to sleep on that side too long. I'm starting to feel pain in my finger joints. Not sure what that's all about. Good luck to you with your ears etc.

 
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