I have a theory I want to run by you guys but before I do that I wanted to ask has anyone been diagnosed with cervical dystonia or torticollis with their TOS?

Shelley,
I was diagnosed with cervical dystonia back in 2003.

I had to look up torticollis, do you think you have that Shell?

[Torticollis is one of a broader category of disorders that exhibit flexion, extension, or twisting of muscles of the neck beyond their normal position. In torticollis your neck tends to twist to one side. The condition can either develop slowly if you have a family history of the disorder, acutely from trauma, or as an adverse reaction to medications.

When the disorder occurs in people with a family history, it is referred to as spasmodic torticollis. The characteristic twisting of the neck is initially spasmodic and begins between ages 31-50 years. If you leave the condition untreated, it likely will become permanent.]
more -
http://www.emedicinehealth.com/torti...article_em.htm

i did not know the name of it, but in the 1980s i took compazine for vomiting and had this as a 3 day long side effect. i had no control of where my neck went and it decided to bend sideways toward my shoulder. i now list compazine as one of my "allergies" so they don't ever give it to me again.

i have also had charlie horses in my chin occasionally. this is very painful.

I thought a couple of people with TOS have this dx as well.

I am working on my long explanation and hopefully will post it tomorrow. Its just a theory but i found something to back it up and wanted to pass it along.

I remember towelhorse always mentioned "wry neck", I saw that is another name for torticollis on some of the sites I looked at.

I was diagnosed in '06 by Dr. J with cervical dystonia and TOS. You have piqued my interest, now i have to do more research on this. I'll share whatever i can find.

HOLY **** SHELLEY!
First of all...I am so, so sorry you went through this sad physical demanding horror. However, I look at it as putting the docs on the spot having to actually listen, bow to you & cooperate.

Second... your tenacity, intelligence, research & incredible breakthrough you may have found as a contributing factor to TOS is AMAZING.

Your a forensic researcher dear one.
xxoo cyn

I was diagnosed with cervical dystonia by a neurologist a month ago

Hi shelly,

this is very interesting and sorry you are going thru all this now. I too see Dr. J and he gave me a diagnosis of Cervical Dystonia (which is basically when your neck is stuck to one side or you have spasms )and TOS because CV the diagnosis code that is approved for botox by the FDA. TOS is not so thats how they get around it.I know because I dont have CV symptoms and I asked dr. j about it. Later I had to fight with my insurance to get the botox covered, and I won because of the CV diag.

I have looked into Valtrex for nerve pain before-I have herpes and take valtrex for outbreaks and it helps the nerve pain that goes down my leg .I have mentioned it to some dr's as maybe helping with the nerve pain from TOs but never got any response.I will mention to Dr. j next time I see him My primary has suggested taking one a day to prevent outbreaks. (500 mg) .I think I will try taking it regularly to see if it helps the nerve pain in my neck and shoulder. I saw another article that I will try to find that relates Valtrex for Shingles with TOS. I will try to post it.

Whats also interesting is that there is a theory that Breast Cancer is caused by a virus. I have BC and also sinus issues, so in my mind I feel it could all be connected to a virus and/or inflammation. I would really like to find an integrative health Dr. who can help me with all of these things.

Questions:

How much is a high dose?
Who is your PT that is interested in the virus connection? Are you happy with him/her? I cant remember if you are still in S.M. I am in Westside too.

Thanks, JKL