Botox for MS (my Experience)

It might be more commonly thought of as a “tweakment” to help lessen the signs of aging, but Botox for MS and other health needs is also a thing. I personally use it as a way to lessen the effects of the severe spasticity I have in my left leg but other MSers might use it for symptoms such as overactive bladder, bladder spasms and incontinence.

Botox for MS helps to stop the transmission of nerve signals that affect the muscle, helping it to relax. It is commonly used alongside other MS treatments, such as muscle relaxers like baclofen.

Botox for MS – the Procedure

Healthline describe how Botox is given very well:

The procedure to inject botox for MS depends on where the doctor injects the botox. For example, if your doctor injects botox into an arm or leg muscle, they will likely do the following:

1. Identify the most affected muscles. They may use an ultrasound or electromyography (EMG) machine to identify muscles and find the best place for the injection.
2. Inject Botox into a muscle. They may inject into the muscle using a small, fine needle.
3. Place several small injections around the muscle. The reason for the several small injections is that Botox doesn’t usually spread far beyond where the doctor injects it.
4. Instruct you to limit some activities. The reason for the instruction is that certain activities can reduce the injection effectiveness.

For Botox injections in the bladder, the procedure typically involves using a local anesthetic injection. But some people may prefer general anesthesia or no anesthesia at all.

Botox for MS – my Experience

I started having Botox administered into my left leg about three years ago and, as stated above, it was to reduce the spasticity I felt particularly in my quadriceps (my thigh). I’d hoped that botox would take away some of the pain that I had due to the spasticity and also wanted it to potentially make my walking that little bit easier, even if I did still have to use crutches/a mobility scooter/a wheelchair at times.

Treatment

The treatment was delivered by a rehab doctor alongside a specialist neurophysiotherapist. They both watched me walk with my crutches and examined my legs, pressing on the different muscles. They identified that my worst spasticity was actually in the back of my calf muscle which I hadn’t realised, but once they started prodding it, I could feel and see how stiff it was! I did know that I had limited mobility in my foot and ankle so I assume that the spasticity in my calf muscle was impacting upon that. They also identified that my quadriceps was tight too.

The doctor and physio discuss between them how much Botox I should have in which part of my leg. They decided that the majority will go into my calf muscle and a smaller amount in my quad. They explained to me that they wanted to make sure that it didn’t relax the muscles too much as I do rely on the spasticity to keep me standing to a certain extent as, underneath it, my leg muscles are actually quite weak.

They injected the particular muscles that they had identified as needing the Botox, whilst I was just sitting in the chair; it wasn’t massively painful, though it wasn’t particularly pain-free either! My calf muscle reacted when the needle went in by strongly tensing, and that was the most painful part. The doctor explained that it will take at least a week to notice any difference in the spasticity of the muscles.

Result

I noticed a definite easing of the spasticity in my calf muscle in that it became much less “hard” at the back of my leg.  I didn’t really notice any difference with my quad muscle. The effects lasted about three months for me and made me realise just how tight my calf muscles were, when they started to relax!  In subsequent sessions, they increased the botox as the muscle relaxation was not significant enough to have any impact upon the overall spasticity of my leg or improvement in my walking. Over the time that I have had botox for my MS, I would say that the biggest improvement is simply the fact that, although I still have spasticity in my leg, the frequency of random, very painful spasms has lessened.

The Downsides

As well as it being quite painful when administered, this isn’t the main downside of Botox:

• It takes a while to take effect (1 to 2 weeks)
• Even if it does take effect, because they have to start with the smallest dose, you then have to wait at least another 3 to 4 months to increase the dose
• The “postcode lottery” of healthcare seems to have a massive impact upon the availability and frequency of Botox treatment; for example, we know that the treatment effects only last for 3 to 4 months but I had my last treatment about nine or 10 months ago. Despite the Rehab doctor advising that I call when my next lot was due to “chivvy them up” (in her words, she said that the people who make the biggest fuss tend to get the appointments), when I did call, they just said that there was a waiting list that they were trying to clear, but were aware that they were behind.

I find it so frustrating as I know that it’s probably something I can get if I went privately, but I simply can’t afford that. Using Botox for my spasticity undoubtedly does help me in regards to the pain I experience day-to-day: every night when I’m in bed, and then again, when I wake up for the day, my legs stretch out and stiffen as a result of my spasticity. My calf muscles then particularly tighten and ball up, which leads me to having to ask my husband to massage them out, or I’ll try do it myself, as it so painful.

Having spoken to doctors and other health professionals, I know that treatments and the time between them are much more coordinated in large cities than they are where I am, a market town where I have to travel to many different places in order to access any support.  I like to think that other people receiving Botox would not have those kind of problems that I do; where I live it is an hour to the motorway, so I hope that I’m just an anomolly! I haven’t had the experience of having Botox in my bladder symptoms, though it might be something I’d be asking about in the near future to see if they feel it would help. (I have urgency issues).  Again Healthline seems to have some useful information:

After receiving Botox injections to treat bladder symptoms, people often report experiencing urinary tract infections (UTIs) as a side effect.

I undoubtedly feel that Botox really helps me to manage my spasticity. When I have had recent Botox and use my FES (Functional Electrical Stimulation) device, I would say that my walking is the best it can be with all my symptoms. However, it is such a shame that these aspects of my care are not coordinated in a way so that my symptoms are managed in a timely manner.  I am now getting the same symptoms in my right leg, with the calf muscle being tight and punching up with spasticity.

Botox for MS symptoms won’t be for everybody and, as can be seen above, there are some potential side-effects that need to be weighed up.  But I don’t think there’s any harm in people asking their healthcare professionals if they feel it is something that could help them to manage their symptoms and live more comfortably as a result.

Until next time,