Anyone else have killer muscle spasms? It's become a huge problem for me, wrecking sleep, walking, standing. It's in my right side below the waist: gluts, thigh, calf, foot, and can be quite severe. I've already had lumbar stenosis surgery last year, which improved some of the worst symptoms, but apparently the current symptoms are probably due to Parkinson's dystonia, a type of dyskinesia, not to sciatica due to back problems. I actually think the 2 are connected, but whatever.

I'm already seeing my surgeon & my MDS neurologist, but would also like to hear any first-hand experiences with treatment, medications, physical therapy, exercises, chiropractor, massage, personal trainer, Rolfing, or anything else. I've already looked up the options, but would prefer first-hand experiences, good or bad.

I take it that you're staying on top of your potassium levels.

I have extensive shoulder pain and stiffness (not spasms) which is helped substantially by lots of vitamin C. I'm up to 4 grams a day but when I first started only 2 grams a day (2,000 mg) helped a LOT in just about 2 weeks time. My shoulder pains are worse now but vitamin C intake controls it for the most part. I myself might move up to 5 or 6 grams and see if it controls it better.

Does your MDS have any referrals /suggestions?
Seems like it can be a specific or case by case thing to find the bes therapy for it.
If the doctor doesn't have suggestions , I'd just start to try some therapeutic massage, bodywork, chiropractic , any of those that you mentioned. But be picky and find the best you can , if they don't help move on..and try another type.. I might start with expert chiropractic , just in case there are misalignments..then go from there.

https://www.dystonia-foundation.org/...nia/treatments
[Treating dystonia is an art as much as it is a science, indivdiuals should feel compelled to locate the most well-trained and experienced doctor you can find. The DMRF can help you locate the nearest, most experienced physician. ]

colloidal minerals seem to help me the most. We buy unflavored from Now and only take 2 TBS about 6 times a month. This takes care of muscle cramps in my feet and legs that I get mostly from dehydration working in the garden in the heat and not taking water with me....BAD girl Aunt Bean!!!

Peony,
Sounds (to me) like dystonia.
Maybe up your levodopa a little bit and or take the prescribed amt at shorter intervals?
I used to get dystonia before DBS and it was painful and distressing and worse when I'd gone too long without any anti parkinson meds.