WOW! I just happened to come across this thread and glad I did.

I not only have MS but essential tremors as well. I was put on Neurontin for nerve pain and spasticity and as a result it helped my tremors as well. I can now put on mascara without getting it all over my face. LOL.

Neurotin can make you a little sleepy while your body adjusts but for me it has been a miracle drug as it has helped with several symptoms.

You might try mysoline (SP?)

I had severe RLS in 2000 and was prescribed pergolide (Permax), a dopamine agonist. This particular medication has now been taken off the market because it can cause heart disease. Dopamine agonists can cause compulsive disorders as well in some people. People should be careful when taking these medications.

I stopped Permax in 2005. The RLS continued but to a lesser degree and last year I went to see a practitioner in Chinese medicine and am now receiving acupuncture and taking a simple herbal mixture. This has helped.

I'm also watching my diet and taking amino acid supplements which help with protein absorption. I'm coming to see that. for me, rest and a particular diet are essential.

Sometimes I still experience spasms and the compulsion to keep moving but these seem to come when I'm very tired. If I am careful with fatigue and stress, things seem to be a little better.

Everyone is different, however, and everyone has a solution unique to themselves.

Dear InHisHands
Please read the reply posting that I just wrote/sent to "walker604". I wrote lots of suggestions that might help in terms of treatments. I have spinal myoclonus and palatal myoclonus. One result of the spinal myoclonus is constant, involuntary spasms of my arms and shoulders and this seems to be something that you also have. I hope that my posting will help you. Please let me know if you if you can't find my reply posting to "walker604" and I will be glad to write you any help that I can. Take care Topsie

i don't think anything really does a whole lot of good. i have tried most all that they recommend. i do better or in my mind i do better on lorazepam(1 mg. 3 x daily. our bodies are all so different. sometimes i think if we think some thing will help then it might. i know i am addicted on the lorazepam cause i don't dare stop taking it. that is the problem with tranquilizers. i do hope you can find something that helps you. let me know and i will try it, too. grandma

I just want to greet everyone a Happy 2009!

Hi, my name is Rosie and I'm 23.. I live in the UK and am a Psychology student. I have severe generalised dystonia and severe full body RSD/CRPS. I get dystonic storms and have been in status dystonicus several times.. anyone got any experience with this? I have taken baclofen (110mg), trihexyphenidryl (can't remember dose, sorry) and 120mg diazipam daily and I still get spasms, twisting and shaking... The UK appears to be really bad at treating movement disorders. Any advice?

Love

Rosie

I also take 200mg/day Primidone but for BP I take Lisinopril/Hctz and Attenolol.
Somedays I need to take an extra Primidone for those bad days. I can now walk for up to about 5-10 minutes. More important is that I am working on getting my balance back. I got so weak, that I could not even raise my leg. Had to have a power chair to even get around our home. I also feel like I am getting my life back. Doctor tells me that I can go as high as 500mg/day before being considered for DBS (Deep Brain Stimulator). I know someone at our church who has had one installed for his hand tremors and it has helped him tremendously. A side affect for me seems to be that my brain is beginning to function again as well. I got so bad I could not even remember whether I had taken meds or not. Almost burned down home before getting good smoke detectors. Now at least I seem to be functioning as well as most people my age. But I know primidone becomes less effective w/time...either tremors get worse or body get better at removing it from the body or both. It is good to talk to others to know one is not alone in what they are facing.