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Muscular Dystrophy Message Board

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Can anyone help?

As a child I always had low blood pressure and hypoglyceamia. i was very active did sports etc, like most children, no problems - infact was quite good.
I believe when i was a baby i had a fall and went into shock - pneumonia etc.

I reached mid 30's and if I had a minor op, I would always faint a few days later - blood pressure dropping quickly. Break out in sweats, shaking, couldn't walk, felt weak for days.
Around age 37, started getting muscle twitches everywhere, tingling in hands & feet. Went through about two years where i couldn't lift my hands above my head as they felt like lead. During this time I had retina problems (torn) also.

Dr said ME, the symptoms subsided a little. Early 40's, menstruation stopped, hair started falling out and definate muscle atrophy in upper arms, thighs, buttocks and face. Hair turned grey, and in order to get through the day - had to make sure I had enough sleep. Terrible brain fog ! and breathless at times. If I exercise I lose more muscle.
I've had blood tests?? CK was 60 whatever that means, neuro said after having EMG and needle nerve test, not muscular dystrophy.
Now aged 49, dxd as post menopausal, and ME.

My face is lob-sided and sunken, i can't get weight on no matter how much i try, i'm 50kg, approx 7st 11 lbs at 5'3".
I've more recently developed at rash around my waist. Unable to have intercourse as too painful. My body and face has gone from someone who at 35 looked more like 24, to now at 49, looking more like 59.
My mother who has had similar symptoms since she was 50, now in her 70's just had a pacemaker fitted after collapsing with breathing problems (twice).
I can see me going in this direction, I am so like her.

No matter who I see at hospital, they say nothing wrong with my muscles!! it's so frustrating, I had to give up the gym because the instructor has never seen anyone lose more muscle rather than build it on his programme and wouldn't let me continue. All my family ever say is "are you ok"?.

In order to keep my weight up, I have to try and stop rushing around. I am thinking FSHD or Dermatomyositis, I'm in the uk and would love private tests, or even travel to get results.
My friends have said clearly I need to see a Dr (again) as this is not me. Because my blood pressure is 120/80 (when raised) usually 104/60, they think i'm healthy. :mad:
I'm sensitive to the sun - HAVE to wear glasses or eyes are streaming. The list is endless.
I am really sorry for going on, but any ideas off as many as possible would be great.


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