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Old 05-24-2009, 10:24 PM   #1
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Muscular Dystrophy Story

Hello all,

I have been searching for a diagnosis and help for about a year now. I'm hoping one of you has a story similar to mine or information that could be of help. Since I'm not sure what the root cause of my health problems have been, I'd like to give a complete description of the order of symptoms I've felt. My grandfather died from MD and I'd like to find out if it's the cause of this.

In my late teens, I had a bad case of claw toes on both my feet. My forefoot was extremely callused and uncomfertable, and my toes were rigidlycurled. I also noticed times when, after standing for a long time, my butt muscles felt really weak and I've felt like I had to sit down, sort of aching. I had surgery to remove what they told me was a benign bone growthonmyleft tibia just below my knee because it was swollen and painful. When I was 20 I had surgery to correct my claw toes on both feet. A year after surgery I was running 5 miles a day and was in the best shape of my life. Slowly but surely, things started to deteriorate. First my feet began to swell up like crazy and felt sore and tired all the time. Then, my arches felt like they were collapsing, like there was no support, and I was walking around on two sacks of flesh. A few months later, my knees began to ache and it was difficult to stand for long periods of time. My leg muscles felt like they were constantly struggling to hold me up and my bones felt unstable. My left knee would hyper-extend when I would walk. Fast forward to now, 6 months later. I'm a 22 year old male 6'2". My quads and hams in m upper leg are gigantic for no reason and swell up when im standing up. MY knees feel out of place or something, they are wider and have a weird angle, it feels like the are caved in. They feel weaker, but look stronger. Its hard to explain. The muscle is bigger but its not toned to my bone, it just sags. Everything feels loose and over exerted and sore. I had to start wearing wider pants because of the huge upper legs ive formed and the angle they are at the knees now. Also, my hand and finger joints are swollen and ache. My hands and feet swell up alot, and my fingernails are clubbed. I have really big hands and feet, really long limbs and a small torso. My shoulder muscles have begin to feel like theyre ripping when i use them a certain way. The best word I have for how my legs feel all the time is just "wrong" "misaligned" I can barely stand for more than 10 minutes and my legs swell up and I have to keep switching my weight from leg to leg to stay upright. If you have any idea what may be wrong PLEASE HELP! MY life is falling apart because of this and at least getting a diagnosis would send me in a direction. The doctors dont seem to have one for me... Thank you so much!

Edward

 
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Old 05-26-2009, 06:25 PM   #2
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Re: Muscular Dystrophy Story

Hi Edward,

My name is Mark. I'm a 48 year old male with limb-Girdle Muscular Dystrophy. I have collected data for many years on every known type of MD. I have information on about 70 different muscle diseases. I don't want to try to diagnose you by any means. But I've checked my data and I'll share a bit of it with you.

One disease jumped out at me based on things you said: Charcot-Marie-Tooth, also known as CMT. It specifically affects Feet, Lower Legs and Hands. Contractures, or curling of the toes and fingers, is a symptom of CMT as well as weakness of the above mentioned muscles. Progression is slow, that is you get worse over years rather than months.

Another disease that I have data on is: Dejerine-Scottas Disease, also known as Hypertrophic Intertitial Neuropathy. But it's also called CMT3 leading me to believe it's another sub-type of Charcot-Marie-Tooth. This also affects feet, lower legs and hands.

One bit of advice I can offer is to find out where your local Muscular Dystrophy Association clinic is. They are the experts and can hopefully tell you if it's a Muscular Dystrophy or not.

There are people here on Healthboards that have Charcot-Marie-Tooth. You might want to check those threads and see what those patients have to say about CMT. Again.......I could be way off. Only a qualified doctor can diagnose you for sure, but I wish you the best of luck.

Take care.

 
Old 05-26-2009, 06:55 PM   #3
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Re: Muscular Dystrophy Story

Hey Edward.
I am Mathew with lgmd. I am not a doctor, but the first thing i would check is the level of cpk (creatine). Another thing that comes to mind is Acromegaly. Check the levels of your growth hormone. Maybe you have to much of a good thing.
search on google for the symptoms. Good luck.

 
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