Hi I am new here, my name is Bill. I was diagnosed with Cervical Dystonia April 2014, and its taken until November to get Botox. All the other meds that my neurologist tried failed, and he sent me to a movements disorder specialist October 2014. The specialist put me Artane for the spasms, Gralise for neurological pain and scheduled me for Botox. Since they I have been improving and my 3rd round of Botox is in a couple weeks, I can't wait! Now the down side: since about January I noticed the lymph nodes in my neck had started annoy me, not quite itching or pain, just a sensation that caused me to want to rub them. They were inflamed and palpable. Then shortly after that I've been having very strange symptoms that come about when I rubbed the lymph nodes: tightness in chest and a feeling like I am breathing in dust; shooting pains through teeth (upper and lower but never both at same time); shooting pains in groin, upper pecs, behind knee, and toes; electric like "shocks" running down abdomen and legs (these are very quick and dont last); itchy skin, and sometimes pins and needles in my arm. I've asked the movement specialists and they said these symptoms are not there area of expertise, and referred me to my neurologist. Of course I did web searches and so some similarity to MS but not a dead on match. My neurologist specializes in MS and said 100% I dont have it. He felt it may be anxiety even though I've never had an anxiety problem before and I work in a very stressful job. I've had MRI of my brain and EMG, all negative. He suggested I work with my PCP for further tests, I had CT scan of lymph nodes which came back clean. Just got a full blood workup, waiting for results. These weird symptoms only come from rubbing my neck (anywhere on neck). If I can control myself and not touch my neck the symptoms fade away completely but are immediately brought back by the lightest rub. Showering, washing face, shaving all bring on the symptoms a bit. My question is has anyone else here with cervical dystonia ever experienced this? For further background I have a lot of metal in my neck, have had 4 surgeries for cervical fusions from ruptured discs, the 4th was through back to bolt down my entire cervical spine since it wasnt healing properly. My PCP said with all of the trauma, metal and now botox added in that maybe there's some sort of combination of things. My only issue is it goes away unless I rub my neck.
Sorry for the long post!

Welcome bill29.

Thank you Kitt!

Hi Bill,

Welcome to the NeuroTalk Support Groups.

I'm sorry I don't really have any suggestions regarding the problems you are dealing with right now but just wanted to say considering your history of spinal problems and spine surgery that perhaps you could also try posting over on the
Spinal Disorders & Back Pain Forum

Hi Bill,
I have a light case of cervical dystonia starting with the left muscle on the side of my neck, shoulder and shoulder blade area. About 14 years ago I was referred to a neurologist that only works with dystonia patients using Botox. I had several injections on the side of my neck, including the back of neck and top of shoulder areas. By the time the injection pain was calming down; it was almost time to go for the next set of injections. Since I didn't notice any relief, I decided to stop the injections.

Since Botox is also used for cosmetic purposes causing those who receive the injections difficulting with smiling or raising the eyebrows, etc. Just wonder if something like this might be happening with nodes causing them to be stiff/smooth; then when any pressure is applied it irritates the stiffness caused by the Botox. The fact that you have the cervical fusion also may be forcing a greater amount of Botox to that area causing the "pins and needles", etc.


Since you have had various tests performed and all appear to be normal, it would appear Botox is helping your dystonia but with the unwanted side effects.
As with many procedures or medications, it comes down to whether the relief from the dystonia is worth the side effects. There also may be some concern whether too much Botox may be going to the area of the lymph nodes causing a build up of Botox.

Wish you all the best.


Gerry

Well there's a new theory that I am just investigating. I have 4 surgeries since 2007, and I have more titanium in my neck than robocop. They use titanium because its strong and supposedly hypoallergenic. But I just found out 4% of people, 1 in 25, actually do have allergic reactions to it as it dissolves over time. My PCP has a theory that all of that metal may have brought on an allergy to the metal. The symptoms match mine exactly. So I am going for an allergy test. Not sure what will happen one way or another. My orthopedic surgeon does not want another surgery. So we need to find out if there are medications to address it if it is indeed an allergy. Keeping my fingers crossed! and thanks for the reply, I'll keep everyone posted.

Bill,

Fingers crossed here too!!!
I had Lumbar fusion L4-5 with metal/titanium done a little over 8 years ago.
Your PCP has a very interesting theory. Did he have any thoughts about an allergy to Botox?

Looking forward to your post.


Gerry