My Experience With Spasticity
Spasticity was one of the first symptoms I experienced before I was diagnosed with NMO. After being diagnosed time passed my spasticity worsen and started taking over not only my body but my life. Spasticity for me has only grown to be an enemy of the state of my body.
Spasticity from NMO: The biggest pain
Spasticity has been one of my main and obvious problems since being diagnosed. Spasticity has slowly progressed in me. It took years for me to realize that spasticity from NMO was affecting me in every way possible. From tripping over myself because I was starting to get foot drop to walking with a limp in my leg, spasticity definitely made its presence from the day I had an attack. I never realized how much problem spasticity would be in my life until it wouldn’t go away. I never realized how spasticity could affect all areas of my life until it did. Now you may be wondering what does spasticity feel like or why it would affect one’s life? Let me explain my pain.
What my NMO pain feels like
For me, spasticity feels like a constant workout that never wants to go away, even when I’m sleeping. It is a painful involuntary jerking movement that doesn’t care where I’m or who is looking. It feels like something it is taking over my body without my consent. It takes whatever muscle the lesions affect and makes sure I feel the pain. It gets so bad I cannot even stand up straight or walk. It makes my legs bend to a 90-degree angle while trying to stand up. It grabs my back and makes my neck turn back while losing my balance. It’s horrible because it doesn’t have a timer. It decides to spasm whenever it wants.
There are several treatments to help alleviate spasms. For example, I’ve tried baclofen pills, but they made me so relaxed that I was always drowsy and tired. Then I tried many more pill treatments, but the side effects were too much for me to handle. Then, I went on to try botox injections directly into the muscles affected, which seemed to help for a while. But it was aggravating that it had to be a trial-and-error medication. Meaning that it wasn’t known the exact dosing of botox for my level of spasticity. For example, if I was injected too much, I could end up too weak, and if injected too little, it might not work, and my NMO spasticity would continue. It’s complicated because as real-life events happen, like getting sick or an infection, the botox might not work due to the inflammation in the body. Finally, after 2 years of convincing from my pain management doctor, he convinced me to try the baclofen trial in the hope of getting a baclofen pump.
A trial injection goes directly into the spinal cord to see what and how one reacts to the baclofen. Let me tell you, it worked so well for me that I couldn’t walk for 24 hr. Meaning I was spastic-free for 24 hours, something I hadn’t experienced in a very long time. I won’t give many details now. But I thought it worked and moved forward with the baclofen pump surgery. Stay tuned for the next article to read all about my experience! The good, the bad, the ugly, and the benefits I’ve got from having a baclofen pump.
Were you misdiagnosed, prior to being diagnosed with NMOSD?