Ok, so I had an awesome Neuro appointment today. Spent what felt like forever talking over the meds and what I should be on and shouldn’t be on, what times of day I should be taking them. What other types of treatments to continue to use that aren’t medication related. For once, I felt like I got SOMEWHERE! I have been on the carousel of Cervical Dystonia/ Spasmodic Torticollis since I was 22. I am 27 now. Opinions from day 1 were: you took too much Phenergan, it’s nerves, you have too much stress, it’s anxiety, it’s Torticollis, it might be MS, it might be Wilsons, It could potentially be early onset Parkinson’s disease, it’s Meige’s, it’s Cranial/ oromandibular Dystonia. I know that most of those are roughly the same and are either primary or secondary dystonic conditions. But not until now have I felt like I was getting anywhere other than “let’s put you on a bunch of pills and see what happens”. Each mini flare was a dose of klonopin and an anti depressant, a bandaid. I received the best BoTox on April 14th at MSU, no one had ever done the muscle mapping before. While it sounded gross and interesting all at the same time it worked! Unfortunately due to the posture change and the lack of “care” for the past 5.5 years, I now have to see a neurosurgeon for the bone spurs on my cervical spine yay.
Thankfully I take NO pain meds. I can deal with the tension most days with ibuprofen and my TENS unit and the stretches that PT taught me. My insurance sucks but it covered most of my BoTox therapy.
Taking:
125mg Topamax
1.5mg Klonopin
800mg Ibuprofen PRN