Not sure I am in the right forum - but I was recently diagnosed with oromandibular and cervical dystonia after suffering for more than 2 1/2 yrs with what I was told by many, many drs was a severe case of tmj. Is anyone familiar with this? Is it something that can be fixed or cured?
In addition to severe head,neck and facial pain I have frequent tongue spsams, numbness down my arms and legs, hip pain, muscle twitching in my arms and legs, restless legs, especially at night, dizziness, nausea and an overall body ache and fatigue or weakness - to mention a few of my symptoms. Talking or moving my tongue seems to trigger all kinds of spasmatic movements of my jaw and radiates pain down throughout my body. The dr who recently diagnosed this is a neuro who specializes in facial pain and tmj - he said the best treatment would be botox injections accompanied by other drugs. Has anyone tried this?
Hi Thelma-Louise,
I was diagnosed with cervical dystonia, my head pulls to the right. I was diagnosed August 2005, started getting the botox shots Feb. 2006.
The shots have helped me very much, I have received my 4th set of shots on
Jan. 2 2007. I have alot less pain and stiffness in my neck, it doesn't pull so much to the right. I feel more normal and am able to go out in public places more. I was becoming a real recluse and still am on some days.
I have had alot of the symptoms that you have with the tingling, numbness, fatigue, dizziness, my neuroligist says it is from the dystonia. I have also had some problem with my eyes called papilloedema, that means that there is intercranial pressure. I had a brain MRI to rule out a brain tumor or MS, the MRI was normal. Thank the good Lord for that!
The answer to your question about Botox working for spasm, I think that it works great, it is expensive, I do not have insurance, I get help with the medicine through NORD (National Organization for Rare Disorders).
Take care and God Bless, Audrey
Thanks so much for the reply - although I wanted to try it I thought it just might be some gimmick promoted by drs looking to make a quick buck. My head and face are so crooked from this and now i have one eye that barely can open.
Have you heard of or have any info - good or bad - on NeuroCranial Restructuring?
I do not have any info on NueroCranial Restructuring. I do think the botox would help you, sure has helped me. Good luck to you, I wish no one had to suffer with this condition. Take care.
My sister has a rare form of oromandibual.. hers is not genetic her was brought on by an accident... for 7 years she has suffered with this.. with her dystonia her jaw becomes completely dislocated.. and has to be forced back into place..the thing that we found to be most help is the botox.. at first the botox would only last for 3 months but now the shots last for about 1 year.. if you do the botox good luck fighting with your health insurance because botox is mostly used for cosmetic things.. we had to prove the hers was not cosmetic but for health reasons...
