Seeking answers

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Regular Member

Date Joined Mar 2006
Total Posts : 135
   Posted 6/7/2007 10:45 AM (GMT -7)   
I am Ann Ireland in England with twin sister!
She has Parkinsons and I have come to see her neuro.  I have a neuro in Ireland.  I tested pos on the Dat scan for PD but both docs say no, I have not got that but DO have some neuromuscular disorder.
I already have crohns and have had surgery and |I have hypothyroidism and am severely deaf.
I am at my wits end.
Feet and hands jerking and jigging - constantly, off my food, no apetite. Diarrea all the time. Have dystonia and chorea and am very weak, I am in wheelchair alot now.
I have neuropathic pain which is AWFUL and seems to have got worse since coming to Englan.
The palms of my hands are on FIRE as well as my legs from feet to just above knees, all materials hurt when touching these areas as does flesh against flesh and friction.
I am also covered in bruises.
Walking is spastic and difficult as is eating.
The doc here says to wait to see what develops and decided against further testing.
Please can anyone here tell me where to take all this.
I live alone and very little help around.
I wake crying and in pain most mornings after a woeful, painful and sleepless nights.

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 6/7/2007 12:12 PM (GMT -7)   
MS is not a neuromuscular disorder, so I don't know that we can be very helpful. You are in England? Do you have rheumatologists there? They might be able to help narrow the focus on what is going on with you.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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