[gypsygirl72]

My GP whom I have been with all my life is concerned. He said he has seen tremors like this before but never with this rapid onset. He took me off prevastatin (high cholesterol drug) and told me to keep taking the soma since it mellows the spasms.

He called the neuro and they are going to fit me in next Thurs. they are going to call today with a time.

I got my release to work from home!! it has to go through HR but there has been a lot of talk already so I may get setup later today or tomorrow morning!! I'm excited to at least have half my life back

What or do any of you know about dystonia?

[gypsygirl72]

There was a cancellation at the neuro's office and I was first on the list. Tomorrow morning at 9. I'm feeling a little nervous though, but I guess I'm on my way to get my questions answered

[curem]

Originally Posted by gypsygirl72

My GP whom I have been with all my life is concerned. He said he has seen tremors like this before but never with this rapid onset. He took me off prevastatin (high cholesterol drug) and told me to keep taking the soma since it mellows the spasms.

He called the neuro and they are going to fit me in next Thurs. they are going to call today with a time.

I got my release to work from home!! it has to go through HR but there has been a lot of talk already so I may get setup later today or tomorrow morning!! I'm excited to at least have half my life back

What or do any of you know about dystonia?

This anecdote only pertains to dystonia--not Parkinson's.

A few years back when I was just starting in neurofeedback, I had an opportunity to speak to a woman with dystonia that got progressively worse, to the point where she flew to Texas to have the muscles in her eyelids removed so they wouldn't clamp her eyes shut. She had flown to Loma Linda for a consult, at which point their only option was deep brain stimulation.

Out of desperation, she consulted with an acupuncturist who first tried acupuncture needles. After a few weeks, when that approach was unsuccessful, he tried a neurofeedback protocol from Margaret Ayers which stimulates a region at the base of the skull, just below where typical EEG sensors are placed. After a week, her muscles started to loosen, and after several months, she was no longer using a walker. When I spoke to her on the phone, she was training for a marathon.

Obviously, her results aren't typical, but I thought I would share it with you. I can find the Ayers protocol online if you have a neurofeedback therapist near you, if both of you would be willing to experiment with it.

Jonathan

[gypsygirl72]

Thank you Curem I appreciate anything right now without a doubt something worth researching

[curem]

Originally Posted by gypsygirl72

Thank you Curem I appreciate anything right now without a doubt something worth researching

This describes the protocol the acupuncturist used to help dystonia:

Neurofeedback to Improve Physical Balance, Incontinence, and Swallowing

http://www.researchgate.net/profile/...de09000000.pdf

You can either find a practitioner in your area, or purchase an amplifier and find a practitioner to train you remotely.

Jonathan

[curem]

Originally Posted by gypsygirl72

Thank you Curem I appreciate anything right now without a doubt something worth researching

I just read your other post and it looks like you are still trying to figure out what's going on with you. While neurofeedback and biofeedback certainly wouldn't hurt you, I suggest you try to figure out what's going on with your physiology first. My thought these days is to start with your diet, and look at what's going on with your gut. Most doctors don't know anything about this, so try to find a Dr. who specializes in functional medicine and who will put you on an elimination diet and evaluate your stool samples, and any other gut-related issues such as Small Intestinal Bacterial Overgrowth (SIBO):

Prevalence of small intestinal bacterial overgrowth in Parkinson's disease.
http://www.ncbi.nlm.nih.gov/pubmed/21520278

Look through PubMed for Fibromyalgia and Gluten:
http://www.ncbi.nlm.nih.gov/pubmed/?...myalgia+gluten

Mark Hyman at TED 2010
https://www.youtube.com/watch?v=IhkLcpJTV9M

[gypsygirl72]

You all are great!! I wish you all the very best as I hop out of this board. It is thought that I am very chemical sensitive. All "fits" were after a medicine change or increase. Going off all medicine except thyroid pill and gabapentin. No thoughts of this getting progressive. Possible for it even to diminish. I am still going to take the B2 & the vitamin C along with researching other vitamins

I wish you all the very best. I just had a small taste of what you all live through on a daily basis - I promise to watch for any benefits or ways to help with PD & neurological research & issues as I see how scary & difficult it can be. My thoughts will be with you all.