Hi all. Has anyone been officially diagnosed with spasticity? I’m 2 years post stroke and have been suffering with pain in arms & legs. Last winter I could barely move & during this summer had issues with my arms & legs burning.
I was also diagnosed with Miller Fisher Syndrome after my stroke and have also been left with seizures. The stroke clinic signed me off in August last year, but since then these issues have started. My GP & neurologist have been focusing on the seizures & have done MRI scans & prescribed me more & more pain meds.
After reading a story on here? I’m wondering if it’s spasticity as my left arm bends upwards & my hand claw together & can barely walk. No medical team has mentioned spasticity to me before, but reading the symptoms on the Stroke Association website it seems to me this is the issue.
Can anyone who has this condition inform me of their experience & where I should turn to next. My GP must think I’m a hypochondriac as I’ve been to see them so often, but I’ve had no answer as to what this could be.
As the cold weather is coming, I have had a few episodes at least once a week & can’t bear another winter like the last one.
I’m about eighteen months into recovery. I’m quite disabled on my right side limbs but I have gained some mobility and dexterity. As far as the spasticity is concerned, from what I have read on this forum I haven’t experienced it in as prolonged or severe a form as some others here.
Whether I am correct or not I cannot claim to know, but I feel it might be an uncomfortable symptom connected with re-connection of neural pathways and automatic responses. In other words part of a healing process.
Immediately after the stroke my right side limbs were pretty much ‘dead’ and inoperative. Progress towards gaining mobility has been accompanied by strong spasms of pain and involuntary movement sometimes. It still occurs from time to time.
I’m sure others will give sophisticated explanations but I can’t be so certain. I feel I am making progress, if only slowly, but if the symptoms are a sign of repair I wouldn’t want to stop that.
I’m sure there will be others along to give their take on this matter.
If I make some improvements even if only slowly I will be happy. When I arrived home at first I was bed and chair bound and needed help to transfer. Now even though I don’t get far I can walk around the house, do a little cooking in the kitchen, make myself a brew, so I now have a little independence whereas before I was totally reliant on others. I also feel quite optimistic about the future.
MFS sounds truly nasty!
Bacteria or virus related?
Also seems to be easily confused with stroke symptoms. I know you’ve said MRI for the spasms i guess you had MRI or spinal tap or similar to diagnose the mfs?
There’s quite a lot on the forum related to neurological pain You have to search to find it and then there’s lots of medication, alternative strategies that people have tried with and without success.
From you what you’ve said spasticity in your arm and hand sounds highly plausible.
It is part of why I have problems opening my fingers out - because there are muscles pulling them in.
my arm curls because the muscles pull it in too
it’s worse when I’m stressed and when its cold.
Mostly I managed to avoid pain and mostly the more I’ve move it around less the spasticity comes on - It’s in the user or lose it category I think
In my non-medical belief one of the common reliefs for spasticity is Botox injections - I’ve been told they have drawbacks as well as being very useful when appropriate I don’t really know what the drawbacks are but that would be something to ask about.
with regard to the GP thinking you’re a hypochondriac perhaps you will directly address that and ask them “do you think this can be explained by hypochondria or neurological causes?” and then ask for appropriate treatment and investigation to rule in and out both since independently of the cause it’s resulting in pain and anxiety. the GP is responsible for pathfinding your route through to relief correctly based /dependent on course
I’m 10 months in and I have had 3 seizures at unexpected times 1 6 months and 2 7 months in. I have now been diaginsed with possible post stroke epilepsy and have some meds. levitiracetem i think post tegratol…
MFS is interesting and I’m afraid I don’t think that’s what I have but I guess it gies to show that seizures and spasms are casued by ?!?!?!?!?
I also have burning pain in my upper arms and shoulders periodically - probably once or twice a day and I use a topical gel to helpas cant take ibuprofen because of the blood thinners. I also take morphine based painkillers every day…
Please do not be afraid to bother your GP that is what they are there for. To be fair you are probably more interesting than someone with a fungal infection on their toe!! I always ask for a double appointment if asked why (never now) I say because I had a stroke and I need some time to explain…
I have a neurology appointment, in March 2024!!!, and I hope to get some maybe answers or more likely more questions then!!
Here is a picture of a polar bear shaking to cheer you up!!
I was on tegretol as prescribed by a Norwegian doctor after a seizure or two then my GP changed that to levi and the change was hard - had lots of side effects at the beginning - sickness - no appetite - extreme fatigue on top of normal stroke fatigue…
Have you had any of those side effects or been on any different meds.
my friend who has epilepsy for a while has a different set completely!!
I have had various like apixiban - didn’t agree with me so ow I’m just asprin, iron other stuff, statins, BP stuff, inhalers etc and I’m waiting to have a heart loop recorder implanted for a year to just double check no AF!!
Sorry to bore you!!
So here is another picture of a polar bear to cheer up up even more - this one is tired!!
Hi, the polar bear looks how I feel when I get home from work . I’ve always been on levetravitam, no other epilepsy meds, but I do take BP meds & several prescription pain meds. Sorry you having such a time of it, things will get better… hopefully.
I’ve written about my Late onset spasticity here before. I was doing so well at the six months mark and graduated from therapy with flying colors. Then horrible spasticity reared its ugly head with nightly spasms and whole right side stiffness; sometimes pain in areas. 1/3 of stroke survivors get this and it can be progressive. I went back into therapy and the therapists don’t really seem to know what to do about it other than stretching.
My Neurologist, GP and physiatrist just throw meds at me that don’t work and make me drowsy.
It is now having an effect on my walking, my art endeavors, and playing the piano.
The spine is the culprit and sends out over-protective tensing of the muscles because the brain has lost control of said muscles to get them to relax.
But…enough about me. I wish you the best and I would do a lot of internet research on “spasticity”. There are some good youtube sites on exercises and the latest “research”.
Hi, I went back to work 4 months after my stroke in November 2022, in July I took a fall and have been having the spasms ever since. As I said I have not been diagnosed with spasticity but I’m wondering if it’s what I have.
No medical personnel has mentioned spasticity to me but the symptoms seem as though it might be. I’m planning on speaking to my GP about it. My next hospital appointment next month has been cancelled with no new appointment as yet, so the GP is my only option.
Hi, thanks for your reply. I too was doing well before this started & as you say everyone just keeps throwing meds at me, I take 11 a day now. I can already feel the colder weather affecting me. I had a full spinal scan I’m July but due to a backlog I won’t get the results until end of October
So, these spasms happened a year after your stroke?
Then it can’t be spasticity
Yes, your muscles have hyper-tone
But, you’re a long way from spasticity, IMO
You might have spasms, like I do, but in the long term, these (hopefully) should subside. Keep working the muscles gently, because if you stop, they will get angry, and hurt more. Try and estimate gentle but steady work… and always listen to them.
Hopefully I’m right, but not having met you in person, and not knowing too much about you, I could be wrong. Good luck, and let us know how you are doing.
You know the problems well, from experience. It is about the spine for the moment, but as the brain takes more control that rapport Spine/ brain changes with the brain able to compete and hopefully take charge. I think we must relentlessly work our muscles with care and love. The brain will participate more and more.
My mother had 2 massive seizures almost 2 years after her stroke. They weren’t sure they were from her stroke, but it was more than obvious to me. She had scar tissue in her brain from her brain bleed. It states online that seizures can occur years later after a brain bleed stroke from scar tissue build-up. She survived her seizures, but later died from sepsis from a c-diff infection caused by imbalances in her body from the seizures. She was very mentally unstable after her seizures. She really lost her mind after them.
Take care of yourself. Exercise gently your muscles. Hopefully, things will improve over time. Perhaps do some qigong, etc.
By the way, they put my mother on the same anti-seizure as you now take.