So sorry to hear all this. I work at Mayo Clinic and my husband was diagnosed at Mayo Clinic in Rochester, Minnesota. That is actually where this condition was first identified and one of the key diagnostic tools is a blood test. My husband did not find baclofen to help, and is on a variety of meds, including neurotin. He tried plasma exchange as an experimental treatment, but that did not help him. Everybody responds differently to meds and treatments. He finds keeping his back really warm helps him, so he wears lots of jackets all the time, even in the summer, he wears fleece sweatshirts. As for dystonia, he does not have that, but a dear friend does and has turned to alternative medicine for much of her support to try to strengthen her neck, etc. She wears a neck brace that helps a lot. I have not heard her mention botox injections and I would have expected she would have told me if she had tried that. I am guessing that placement of those injections can make a difference, similar to when a steroid injection is given for a bad knee, it has to get put in the right place to really help. I am not a doctor or any type of professional care giver and what I'm saying is not anything official from Mayo Clinic. I just happen to work there, in the communications department. All the best and happy to talk more if that helps.

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