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Old 06-25-2010, 06:32 PM
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
SandyRI SandyRI is offline
Senior Member
 
Join Date: Dec 2008
Location: Rhode Island
Posts: 1,056
15 yr Member
Heart

Dear Ali,

I'm sorry to hear that you are still battling this beast, and that things don't seem much easier for you....I sincerely hope that you are still going to school and enjoying your coursework.

I can't give you any feedback on the drug that your doc has recommended because I have never heard of it - sorry.

My doctor in Boston recommends intrathecal baclofen for dystonia. There's a new thread here for pain pumps - check it out.

I truly wish you well...xoxox Sandy


Quote:
Originally Posted by ali12 View Post
As many of you know Ive had RSD for three and a half years now and its constant in my leg and flares in my arm
At the moment I am having bad flares in both and the dystonia in my leg is worse along with the fact that I have now developed dystonia in my hand
Its often impossible to sleep and more often I am having small fainting episodes where sometimes I come round to find a white foam in the corner of my mouth
I meet with my doctor to look at medications to help me through this most recent flare on Wednesday - As you may be aware I currently take oral ketamine but on an as and when basis as I tend to cope with the pain much of the time by knowing my limits, listening to my body and pacing myself.
My doctor is looking at morphine for pain and baclofen or botox for the dystonias
Sativex has recently been licensed in the UK and I was wondering if its combined effects of reducing pain and helping muscle spasms may be something that would be beneficial to me. I have read the odd few articles on its use in RSD but understand it has been used for sometime in the USA and Canada so was hoping someone out there could advise me on whether it is worth pushing to try this
Also, a friend mentioned that pain, chemical imbalances and health conditions can bring on forms of epilepsy and that it is possible the seizures, passing out and foam could be signs of this - has anyone else experienced something similar
Thanks for any advice you can give me
Love
Ali x
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"Thanks for this!" says:
ali12 (06-26-2010)