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once you got one thing wrong with you, they find more and more

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#1 Eos


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Posted 30 June 2010 - 04:10 PM

I am just about afraid to see any new doctors anymore. The new rheumatologist found I had arthritis of multiple joints and a muscular dystrophy disorder, causing muscle pain and extreme fatigue: myodenylate deaminase deficiency. Shocker yes, but in a way I feel like people now have more than ever no right to call me lazy or weak. The reason why stairs get me tired actually has a name. The reason why my fat butt cannot manage a gym has a name. (I have gone up from 110 lbs to 130 lbs in the past year and I am only 5'2"... it all collects in my butt/hip area.... ugh!)

The doctor gave me mobic for the pain. Anyone taking that? I have some side effects.... bloated to a point where I look like I am approaching the 2nd trimester. Cannot get into my clothes. I went off it about 1 week ago, but still bloating. I am not vain, but please someone at work asked my coworker whether I was pregnant!!! YIKES! Suggestions? Gasx, no effect.... stool softener no effect... what to do? :temper-tantrum: Why don't they make meds that cause weight loss and concaveness for once?

#2 Amanda Thorpe

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Posted 01 July 2010 - 08:13 AM

Hello Eos

You so have the right to pitch a fit! If women made medication it would cause weightloss and concaveness and any weight unavoidable gained would not collect in the wrong areas!

As umpleasant as it is to have additional illnesses you now know why you feel as you do and that there's a legitimate cause. It must have been frightening to be told you had a muscular dystrophy disorder though. Do they have any medication lined up for you to help manage the symptoms?

And by the way who on earth is in your life that's calling you lazy? Please send them this way...we know what to do :angry: ! Needless to say we think you're amazing.

Take care.
Amanda Thorpe
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#3 Eos


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Posted 01 July 2010 - 02:08 PM

Thanx Amanda. I have been called alot of things (grumpy, bitchy, ...)... but amazing thats the first. :wub:

No there is no known treatment for the MADD, besides frequent naps of course. They say to take 500 mg of ribose per day before exercise, but it has a very short half life, hence it won't be around for long.... and taking too much causes diarrhea. Seeing my doctor in august...the nurse said I should think about a muscle biopsie. OUCH! I envision them cutting a hole in my thigh and tearing out a piece...

Just feel like crawling in a big cave and never coming out lately.

#4 Snowbird


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Posted 02 July 2010 - 02:08 PM

Hi EoS

Sorry to hear you now have muscular dystrophy disorder on top of the other things you deal with daily.

I'm with Amanda on this one regarding anyone who would call you lazy or otherwise...rest assured it's not you, it just shows that unfortunately some people are very much lacking in compassion...there's a huge difference between being unwell and being lazy....and we know the difference!
Sending good wishes your way!

#5 Buttons


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Posted 04 July 2010 - 05:48 AM


So sorry to hear of your Muscular Dystrophy diagnosis but at least you now know what is causing some of your problems.
I have a family history of MD, and although there is no cure it is possible to lead a 'normal' life with it and you quickly get to know your capabilities & make adjustments. Like Scleroderma there can be some with it quite severe while others seem to get it very mildly.

The medications we are given do seem to cause us weight gain, they certainly have with me!

Take Care