Hi, I have had my neurologist appointment 4 days ago and it was not great news and delivered with little feeling and even less information. I have MS and the muscles twitching I am experiencing is not an MS symptom? I was more or less told it’s in your head and probably best to get on with my life. I would like to know is it in my head or has anyone else experienced this. I get muscle twitching in my buttocks,feet,under my ribs and other random places. They last a few seconds but it is driving me made. They seem more prominent at rest and I get these jerks (not the neurologist) but body jerks on and off too. Is this MS is it something else, I just don’t think it’s a good start to my relationship with my neurologist. Has anyone got any advice please. Thanks Andy
Hi Andy,
You say that you have MS but that your neurologist says your muscle twitches are caused by something else.
Before I was diagnosed my neuro told me that, in his opinion, I had a functional disease. I was packed off to talk to a psychiatrist who, after determining I wasn’t depressed, sent me back to the neuro.
Then I had the lumber puncture which showed the indicator for MS. The neuro was clearly irritated to have to tell me he was wrong.
- Is this the same as your experience?
- Who diagnosed MS?
- Have you had any other tests?
Anthony
Hi Anthony, thanks for your reply, I had a diagnosis of MS of Monday. I have had numerous symptoms and 2 MRIs both showing lesions but not enough to confirm diagnosis. I then had LP which confirmed MS although neurologist didn’t explain how they have made the diagnosis. He then went on to say that I had 8 lesions and implied that was enough to have made a diagnosis without LP? So I then went on to explain present symptoms which are burning, slight facial numbness and jerking limbs and annoying twitching muscles. He then told me to stop taking Baclofen prescribed by GP as it was not for twitching and this is not MS symptom. The problem is it’s the main symptom for me at the moment. Do you have muscle twitching and does it move to different places? Have heard of this as an MS symptom or is it stress? I don’t feel stressed in fact relieved to have an answer. I am writing this on my phone and can’t reread what I have typed so apologies if it makes little sense. Thanks again for taking time to replying. Andy
Hi Andy,
Everything’s clear as a bell except I don’t understand why your neurologist says that muscle spasms are not a symptom of MS.
It was a twitching leg that I told my neurologist I would like “fixed” first. He gave me tablets for it.
Here’s some of the muscle relaxants from the
- Baclofen
- Tizanidine
- Gabapentin
- Dantrium
- Diazepam and clonazepam
Because the nervous system is so fiendishly complicated it is a lottery to find the right medication for your spasms. You should expect some not to work, work too well or just right. Think ‘Goldilocks and the Tree Bears’.
Get another appointment with your GP and tell him/her about your concerns with the neurologist. If you don’t think that will get you anywhere, change your GP. I do.
Keep in touch,
Anthony
Hi Anthony I am not sure if it is in the wording spasm or twitching are they the same? I can visibly see and feel my muscle move. Rhythmic muscle movement then it will stop and the I can get it in another location. Short periods of time not painful but annoying and will wake me or stop me from sleeping. I would describe it more of a twitch than a spasm but I don’t know. I am still taking Baclofen and it doesn’t stop them but they are less in tense and the duration is shorter too. I really appreciate you taking time to reply, thank you. Andy
Hi Andy I’m waiting for a MRI scan I to have muscle twitching my neurologist says it’s benign fasciculation Syndrome. And is only sending me for a MRI scan to a lay my fear of MS. I have electric sensation in my legs and numbness in my face. Is your ms rrms or ppms?
Hi, sorry you have to go through this it is hard at the moment, I know. I have no idea what MS I have as I am awaiting 2nd appointment and follow up MRI. I am still struggling with twitching and my meds have been changed to Carbamazepine again. I don’t think they are interested and think it is my anxiety causing it, I don’t know myself anymore. All I know as I am typing this my thigh twitches and my feet I have pins and needles in my face. Don’t search the net it will only make your worries worse, to late for me lol. But so many people say they have MS and have had this at some point and lots also turn out to be nothing. The MRI is a good start until then try and relax a little. Hope it is not MS and if it is you are not alone, let me know how you get on either way. Andy