Hi
I was diagnosed with MS in January 22 whilst my GP investigated neck spasms. The neck spasms started in July 20 with my neck not feeling right and progressively deteriorating to the point that I struggled to keep my head still unless I held it at a certain angle. I was referred to a neurologist who confirmed MS with a lumbar puncture and diagnosed cervical dystonia for which I have botox injections (go NHS, turned 50 in the Feb and getting free botox:-)). The botox improves things considerably for about 6 weeks and then the dystonia starts to gradually deteriorate, I can have further injections at 3 monthly intervals. My neurologist is unsure if the dystonia is related to the MS; the MRI scan found an inactive MS lesion in my cervical spine. I cant help but feel that the cervical dystonia is my first MS presentation and I wondered if anyone else has had a similar experience and if so, what treatment helped?
Alison
I’m surprised that you were given an MRI scan. If they suspect cervical dystonia they don’t normally carry out MRI scans. It is against NICE rules! Fortunate that they did in your case.
My neurological symptoms go back 40 years to when I was early 20s. Hermitte’s sign, heavy legs, fatigue in particular, plus two bouts of what were put down to vestibular neuritis which left me with slightly impaired balance. Had issues in my 30s with difficulty walking, leg weakness and weakness in eye muscle, and some pins and needles in my feet, right foot mostly. At some point the pins and needles became permanent. These are not untypical of MS - but I never had a lumbar puncture and MRIs were not invented back then, so I never got a diagnosis.
I developed cervical dystonia in my early 50s. I did a physiotherapy programme specifically for the cervical dystonia that helped quite a bit. I would highly recommend physiotherapy that is specific for cervical dystonia (not available on the NHS). For many with cervical dystonia, zinc and magnesium seem to help. I was put on Dysport (botulinum toxin) about 10 years ago, at 12 weekly intervals, which reduced the spasms strength. What really helped me, however was when I went onto HRT and my dystonia significantly improved. It is not uncommon for oestrogen to help - some neurologists are aware of the hormone connection. The amount of Dysport was reduced too, and I was just about able enough to return to work, though not in my original occupation.
Then 3 1/2 years ago about 3 days after a round of Dysport injections I developed generalised weakness that affected my legs in particular. It slowly resolved over the next 3 months. On the next round of Dysport, 3 days after the injections I got a recurrence of the generalised weakness, but this time it gradually progressed from my legs to my core muscles and my arms, and has not resolved, plus serious fatigue. The neurologists agreed that the Dysport was the trigger and submitted a yellow card. They didn’t know whether the weakness was a direct cause or whether it had unmasked some other neurological condition. They still don’t know, but they have dragged their feet on any investigations - to be honest they really don’t want to address the damaging effects of botulinum toxin. Just say I have something rare going on.
After a year and a half they finally did an MRI of my brain. I’ve still not been offered a lumbar puncture. That showed up disproportionate atrophy in the parietal area of my brain (often linked with early onset Alzheimer’s), plus quite a few non-specific lesions, that may or may not be demyelinating ones. However, a couple of studies on dystonia patients compared to controls, carried out to understand more of what is happening in the brain of people with dystonia, discovered, by chance, a strong correlation between the number of botulinum toxin treatments and degree of atrophy in the parietal area of the brain. So it strongly looks as if the dysport has been damaging my brain. So my warning would be, steer well clear of botulinum toxin - it gets into the brain within hours of injection, and appears to be actively knocking out acetylcholine in neuronal cells for years. It doesn’t cross the blood/brain barrier (which they might tell you) - instead it transports through neuronal axons into the CNS and brain (which they won’t tell you). It knocks out acetylcholine in the brain, but acetylcholine is needed for the proper development of oligodendrocyte cells which repair myelin sheaths. So it is reducing the ability of the brain to repair myelin sheaths. Not what you want, especially if you have MS. Incidently Alzeimer’s is linked to reduced acetylcholine. If I knew years ago what I know now of botulinum toxin, I wouldn’t touch it with a bargepole. Only relatively recently was it given a black box warning.
So having warned you of the dangers of botulinum toxin, I’ll return to your original question. It could be that neurological damage, such as caused by a lesion, maybe caused by MS, or something else, could knock out a bit of the brain, which then rewires, but in a slightly maverick way, that shows up as cervical dystonia. Most cervical dystonia is described as ‘idiopathic’ i.e. they don’t know the cause.
Back to MRI scans - as they don’t generally do them for people with cervical dystonia there are very few baseline MRI scans before botulinum toxin treatment. And they don’t do them after, so neurologists are oblivious to the brain atrophy that botulinum toxin may be causing in dystonia patients. You at least have a baseline MRI.
Thank you so much for your reply, its very much appreciated. It sounds like you have really been through the mill. Can I ask if you still have cervical dystonia? My consultant seems to think that my dystonia might resolve with the help of 3 botox sessions but a simple google search informs me that dystonia is a lifelong condition.
I have a neurophysio appointment tomorrow, the msk physio team referred me onto neuro and I have to say that the msk physio was helping so hopefully the neuro team can continue with the improvement made to date. I will take your advice and source a private physio who has an interest in cervical dystonia, so thank you for that.
I started HRT around October 2021 which has helped me in numerous way’s but doesn’t seem to have helped the dystonia.
Hi Alison
Yes I do still have cervical dystonia. When I developed the generalised weakness, the weakness also affected the dystonic muscles so the pulling is less. Also I was getting muscle atrophy of my SCM in particular just before then - which happens when you’ve had botox for a while, so they hold off for a session or more. It has not recovered its strength, 3 years on.
A few people do have remission from cervical dystonia. For many it does seem to settle down as they learn to manage it better, though without it actually going away.
I bought a PT program from a woman in the US who has CD, and who learnt how to manage hers, and has helped many others over the years with what she learnt trying things for herself! She’s still selling the program, and offers support with it. It helped me, and i know a couple of others too, who were on the same CD forum as myself - we all had torticollis, I also had some laterocollis and some antecollis. One lady with retrocollis it didn’t seem to help though.