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TOPIC: Satvex prescribed for Dystonia.

Satvex prescribed for Dystonia. 1 year 8 months ago #3934

  • willb
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Hi All;

I was diagnosed way back in the 80's with what was then called "spasmodic torticollis" now"cervical dystonia."I think I may have been amongst the first in my area to be prescribed Botox as a treatment as I was filmed by Neurology in before and after treatment situations. At that time I was given about 10 injections each time and very quickly I benefitted greatly in that the discomfort I had was almost totally gone and my neck movement,prior to treatment which was my head locking 45 degrees to the right,became almost normal. Over time,gradually the treatment became less effective,a building up of antibodies as I understand it and the symptoms gradually returned.Over a lengthy period, I went through various types of Botox and finally was put on "Baclofen" tablets ,20mgs twice daily around 10 years ago
Having reached the venerable age of 70, 3 years ago,I was discharged from Neurology with the words," there's no more we can do for you."

The symptoms of my Cervical Dystonia" are now worse than they ever were, a muscle in the left of my neck frequently sometimes like a crowbar. As a widower, I really am rarely out as I use a computer for messages etc.

As an aside, some time ago,I did apply for disability allowance but was unsuccessful as I believe my GP did not truly understand how debilitating this condition is. I never tried again !

So now to the real point! I have read over the last few years about "Sativex" FINALLY being prescribed,in some areas,for spasticity in some people whom unfortunately have Multiple Sclerosis. I have also seen various reports some good,some not as to the effectiveness in relieving spasticity by the use of Sativex.
I understand Sativex is expensive and would probably be prescribed only by a Neorolgist and not by a GP. Has anyone on this forum been prescribed Sativex for Dystonia and if so ,how effective or not was it ?

Thanks in advance for any,if any answer to my lenghty tome,

Take Care, willb.
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