Discouraged about Botox for spasms
I've had MS for 21 years, currently SPMS for probably 10 years. I've been dealing with increasingly severe muscle spasms in my right leg, specifically in my right hip. Baclofen isn't touching it anymore, so I got the referral for Botox. 10 days ago I got the first round of injections, and I was so hopeful. I haven't been able to leave the house in six weeks, I've been forced to sleep in my reclining wheelchair because I can't transfer in and out of bed anymore. I'm an extremely active person, travel solo around the world in my wheelchair, I am a documentary filmmaker, run two businesses, and to be sidelined like this because of these horrible spasms has been a nightmare, and it's also taking a huge toll on my mental health.
Anyway, she started with 200 units and hit my hip flexor and my right adductor, which are the most common culprits. Unfortunately she skipped a spot that was a problem, so I had to ask her for another hundred units. She may know what she's doing as a neurologist but she has a horrible bedside manner, completely dismissed my request to use EMG guidance and just did it by sight and touch. I had to do all the homework myself and she did nothing to calm my anxiety or explain to me what I could expect while the Botox kicked in.
Unfortunately, 12 days post injection, things have gotten worse. I've had very little relief from scissoring or the knee to chest spasm, and now I have other muscles compensating for the Botox. Now I'm getting even more forceful spasms from my gluteus, piriformis, and my lower back to compensate. Her solution was to drug me up even more, pushing a heavier dose of baclofen, which is difficult for me since I live alone and I need to be able to work and drive. I had to push her to schedule me for the additional hundred units of Botox that I'm authorized to try to hit a couple of these spots, but I think it won't be enough. I know this is a process and they fine-tune it with every round. But I am really at a breaking point mentally and emotionally with these awful spasms and I'm desperate just to sleep in my bed again and leave the house. I'm missing so much, including a chorus concert I've been practicing for months and my son's high school graduation. I've read stories of many other people getting Botox with success, but also some people that it didn't work for. I'm just looking for any little bit of encouragement because this has been a personal hell.