The NMO Symptom I Experience Most: Spasticity
Spasticity for me has been a primary indicator that something is wrong with my body.
My NMO spasms weren't a surprise to my doctor
When I was diagnosed with NMO back in 2016, it was no surprise to my neurologist that spasms were intensely taking over my life. After being referred to a physiatrist, I really got an opportunity to learn about my body, how the muscles and nerves work together for body movement, and so much more.
The medication was too much for my body to handle
I began trying out pill medications to help alleviate my spasms which mainly affected my legs. But the side effects were greater than the benefits, and I wouldn’t last long on the pill medications. There were a variety of medications from Baclofen to Tegretol, and they all were too much for my body to handle.
Let's try botox!
Then I tried localized injections of botox directly into the affected area. In my case, my lower limbs. The injections seemed to work for about 2 years, but it was very time-consuming. I had to go every 12 weeks to get these injections done and it was so annoying because it got in the way of life events.
They wanted to install a what in my body?!
I spent about 3 years trying all these medications to help manage my spasticity and it was very frustrating. During all this time my doctor was informing me of an implantation device, a baclofen pump, to better help manage my spasticity. I always brushed it off and acted like it wasn’t a possibility for me. The thought of having an implanted device in my body just didn’t sit well with me. I was trying my best to alleviate the spasms that were ruining my life with anything and everything I could. I even tried acupuncture, a chiropractor, deep tissue massage, and more.
I reached my breaking point
The summer of 2020 was my breaking point. I couldn’t sleep and couldn’t function due to how bad my spasms got. I was like a cranky walking zombie. Finally I decided to move forward with a trial injection for the baclofen pump. I was a trial to see how the medication would impact the spasms and whether it even worked.
Let's just do it all at once
Well, I had the smart idea of killing two birds with one stone and getting a spinal tap done, since they we already going into my spinal cord to inject the baclofen. Grand idea that was (shaking my head). Although I thought it was a bad idea at the time, it worked out, and I experienced no spinal headache from the procedure, which can be a common side effect.
It was instantaneous
When I received the initial baclofen injection, I instantly felt a flush of hot lava going down my body. I then felt a sense of soreness in my legs, which was like a pain due to how relaxed I was. I couldn’t believe how instant the results were. Until that moment I had not realized how tight my muscles had been and how spastic I was.
Let's move on to installation
Apparently, I’m super sensitive to medication (hence why I failed all other medications), and I was not able to walk for 24 hours because of how the baclofen was injected into me. I slowly regained my strength. I felt a painful alleviation and got a sense of hope that maybe, just maybe, a baclofen pump might be the answer to my spasticity problems. So, I moved forward with booking an operation day for the installation of my baclofen pump.
Stay tuned for details of my procedure in my next blog!Have you or someone you know been treated for spasms with baclofen? Share your experience with us in the comments
Do you feel guilty when you need to rest?