The NMO Symptom I Experience Most: Spasticity

By Aldelly V.

3 min read

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

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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RichardS Member
Hi, spasticity is bad for me too. My left srm is kind of frozen in place at times, but it's the spasticity pain in my legs that bothers me the most. It is especially bad at night, keeping me awake with aching and withpainful, violent, tremors at times My new neurologist noticed my knees knocking when O walk as o he used botox ony inner thighs abot once every 3 months starting a few uears ago. That wad a huge help in Walking better, standing better and made everything much more comfortable. It doesn't help the noght spasticity, amd it's expensive, about $1600 Canadian dollars per treatment, not covered by our free healthcare system, and my private medical insurance isn't enough to cover it plus my family's regular medical expenses. I haven't had botox since the beginning of the panfemic, so it's yime for more. Thanks for the Baclophen tip, I'll try that too.
1. Aldelly V. Moderator & Contributor
 <inline-mention username="RichardS" user-id="4515030"/> sounds like we have similar experience. Yes botox does wonders. But try the baclofen injection first. 😀
2. Aldelly V. Moderator & Contributor
 <inline-mention username="Haleemah Sarwar" user-id="4537021"/> Yes! and to the bladder too!
RichardS Member
I'm so sorry you are expecting tremors in your hands and arms. I get that on my left hand and arm , but my left sode had been paralyzed and useless since the early 2980's, so ot doesn't teally bother me that much. My neurologist didn't use ibotox on mef or the tremors. He used ot to redice the muscle stiffness so my legs are not together and bumping together and knocking at the knees when I walk. It might help for tremors , but you'd have to be careful with the dosage so you don't accidentally make your hands and arms too paralyzed by botox for 3-4 months. My neurologist started with small doses, then slowly increased it.
1. Haleemah Sarwar Moderator & Contributor
 Thank you for the advice Richard! 
2. RichardS Member
 <inline-mention username="Haleemah Sarwar" user-id="4537021"/> wow, I really have to check my posts for typos before sending , sorry folks 😀
Aldelly V. Moderator & Contributor
we get it don't worry 😉
CommunityMember94fccc Member
A few weeks ago I had the worst right feeling in my left foot actually it was the big toe on my left foot. The feeling I had was uncontrollable and very painful stiffness where my big toe was lifting up a cramp painful feeling. I just couldn't relax my big toe. It was like as if someone was controlling my big toe to lift up. It hurt so much. I had to get out of bed, because I was in bed at that moment when the painful stiffness occurred.