Would love to help people with cervical dystonia

Alexxx

My wife has been dealing with issues with her neck and shoulders along with severe headaches for a couple years now. Non of the doctors can figure out why she has this. Would you mind telling me how yours started out?
She has lost about half of her range of motion turning her head one way and her neck and upper shoulder muscles are always very tense on the opposite side.

Take care,
Bill

Alexxx-

Thank you for the info. She has been to one of the best neuros in our area and they were stumped. They sent her to a PM doctor and he tried all kinds of injections and RF ablations. That worked for a couple weeks and then it would return. She does have degenerative discs in her neck. It seems to be getting worse the more her neck compresses. He did want to do some type of Botox, but we lost our insurance and the PM doctors that our state insurance covers won't take her on, stating she has to complex of a problem.

Take care,
Bill

Hello Alexxx and welcome to the chronic pain forum. I went in and removed your email from your post to avoid you getting hit with spam. You can put your email address in your profile and our members will be able to see it there.

Its great that you have responded as you have to this treatment, but there is no guarantee that everyone else will have the same results. It is kind of almost like its too good to be true. And generally when that happens its just that.

Did your health insurance pay for this treatment or did you have to pay out of pocket? If you paid out of pocket would you mind sharing with us what the cost was?

I do hope that you continue to do well. Take care......Susie

Hello! I am 38 and I have had Cervical Dystonia since I was 23. Looking back I had some early signs of it but a car accident really brought it on for me also. It took me quite a few years to finally get a diagnosis. The dystonia progressed for me over a period of about 10 years and it's since leveled off. I've tried everything. For me Botox didn't help that much, it made my tremor worse and I hated getting botox in my neck. I've tried accupuncture, physical therapy, diet and exercise. I personally have been able to control most of my symptoms through consistent diet and exercise. A lot of the exercises and stretches were learned through Physical Therapy which has been immensly helpful for me. I control the symptoms enough that unless I told you, you wouldn most likely not know anything was wrong with me. I appear the picture of health and my avid diet & exercise for so many years has had the added benefit of making people think I'm 15 years younger than I am! I do a lot of postural exercises like pilates and a lot of stretching. I also go jogging and do yoga and became a massage envy member for monthly massage. I have been able to lead a pretty normal life, but dystonia is always there. My head shakes and that bothers me, but mostly when I'm anxious or I'm having to look at someone straight on. The different "tricks" I have to stop the shaking work most of the time. I do worry about my long term prognosis because of the stress on the joints. I was wondering if any of you have been diagnosed with any food intolerances or immune issues. I was diagnosed with IBS in my early 20's as well and was told I was lactose intolerant. I also had an allergy test done and found I was allergic to a lot of things. So many, I did allergy shots for 3 years. I struggle with weird head pressure that makes me feel kind of out of it and some fatigue and joint pain. This past summer I was told I have a positive ANA and possible fibromyalgia as well. I'm wondering if anyone else with Dystonia have been also living with some of these other symptoms. It seems weird to me that I would have all of these things, I really am a pretty healthy person and was never sick until after 23. I just started a regime of CoQ10, NADH, Fish Oil and my multi vitamin. I'm planning on posting my results with these supplements.

I hope you all are doing well!
Kristen

As a long time CPer I find odd that a treatment that drastically changed your life and was not covered by your insurance can't stimulate you to remember the cost? I recall every penny of every treatment that worked and those that didn't!

Referring me to their website could be construed as advertising and soliciting. Fine line.

When people are sick and suffering from debilitating illnesses they will grasp at any straws and many of those are more than willing to depart them from their money.

Hi Eric & welcome to the forum. Just so you know Alexx has not been to Healing Well in over a year. Any time you want to see when a person has last posted something click on their name.

Eric we ask all new members to post a separate intro thread so that all people will see it & be able to give a proper hello & welcome aboard. By posting on an older thread not many people will see this. To start a new thread look to the left & click Post New Topic, type in a heading & start typing. We like to keep the older threads off of the main page so I will lock this thread.

Thanks.