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Old 09-18-2006, 12:47 PM
ol'cs ol'cs is offline
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Join Date: Sep 2006
Posts: 629
15 yr Member
ol'cs ol'cs is offline
Member
 
Join Date: Sep 2006
Posts: 629
15 yr Member
Default we might wanna revamp to.....

All of us to another. "Dystonia pain" in PD is a result of "which subtypes and what are the particular problems of the nigral population of neurons, your special "case" of PD creates dytstonia, rendering the feeling of a kind of bone not fully "with" the rest of your body. Most PWP who have experienced dystonia know it as a "pain in the neck" which is often a symptom of early PD prior to introduction of sinemet or some other drug. Many go on for a long time, ignoring the fact of the growing incapacitation is the signal that has to be addressed. We still don't know how to control dystonias all that well. For most, initial treatment with sinemet will resolve matters. But as you go on, the sinemet response wanes and the "dystonias" come back.
Dystonia, when and if it raises it's ugly head in your particular "case" of PD, often respond things like massage, swimming, bathing and partaking in as much of anything that gives you "relaxation", and you've got to take it real easy for awhile. Dystonias arise from tension building up in one set of muscles in the "tensor flexor" muscle pairs that are attached to bone, and not being able to relax, and then tense up. The amount and length of time the misdirected signals occur, the more "Dystonic " you may become.
The drug way is first to rank up your sinemet (if you can!). Dystonias can lead to bizzarre "posturing" as you continue your life, without some kind of interdiction. Many PWP have tried muscle relaxant type drugs (there's a whole bunch of them like flexeril, benzodiazepines (test klonopin against valium and a few others to deetermine which suits you best).
That being said, it's time to try to answer what I think the author of this thread had in mind. Ya just gotta keep trying different drugs (Baclofen, Neurontin, etc).
We just gotta take it, blather on, check all options, try something, anything. Everybody's got that "difference" in what they consider their worst manifestation of PD. If you start to get "intolerable dystonia, with moderate to severe pain syndrome" then you've got to go to a neuro, tell them that life sucks big time with the dystonia, and what the hell are you gonna do about it!. That's not all by any means. Dystonias incurr such different feelings among different PWP, that it's difficult to get insight of what's happening to you as compared to other's who can only think in terms of their own experiences.
Wish I could say "try this and it's definitly gonna end your dystonia, i can't, but i'm sure that their are others here who can put in their reply if anything they did or do to prevent dystonia works OK ,no BULL
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