The following is a story by one of our group members, who experienced cervical dystonia while she was diagnosed with SFN and B6 toxicity.
Kim K.
My SFN and B6 toxicity were diagnosed while I was complaining about extreme shoulder and neck pain. My muscles were so tight and painful. I was diagnosed with cervical dystonia on Sept 29th. It is neurological issue. My brain is sending bad signals causing 4 of my neck muscles to lock tight all the time. It took over 3 years to finally get this diagnosis, after being repeatedly told my pain was a Psych issue. Anyone who has similar symptoms should get evaluated for cervical dystonia. I remember people discussing with me that they had similar symptoms in the chats here. My movement disorder Dr said it is sad, but, this is how people with this disorder are often treated until they find their way to the right Dr.
I am having my first treatment, Botox injected into my four affected muscles, on the 17th. He said this should stop all the muscles from tensing constantly. He also said that none of the meds I am on, are NOT used to treat this and will ween me off of my 800mg gabapentin, and stop the diclofenac and muscle relaxers. He said the muscle relaxer helps with a higher dosage than I was given. Due to the drowsiness caused with high dose muscle relaxers, they now do Botox first, and muscle relaxer small doses are sometimes used needed after the Botox. The Botox treatments are repeated every 3 months, forever? They don’t know what causes cervical dystonia, it appears to run in families. It wasn’t until 20 years ago they realized that it is not a Psych issue, but is a neurological disorder.
Urging anyone with neck pain to research the possibility and be evaluated if needed. I am so grateful to finally have an answer to the pain in my neck and shoulder. I am hopeful that the Botox treatments can bring some relief and allow me to live normally again.