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Old Fri Apr 6, 2012, 07:52 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi,

I was reading back on my posts and realized that I didn't make it clear that my muscle problems are all neuro related.

The neurologist said I have generalized dystonia, hypertonicity and spasticity. He also said it was all my fault for refusing treatment, at this stage he doesn't know if it's permanent but he suspects it is. He is very blunt and ruthless not to mention pessimistic.

I've heard there is some kind of port that can be implanted into the spinal cord that can deliver drugs to ease spasticity and I'm going to raise this with him next time I see him. Botox can be injected into individual muscles but my problem is too generalized for that to be of any help.

Regards

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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