Hello all I am very new to this forum and wondered if I could get some advice and answers from those of you that have experience with MS / Transverse Myelitis. Around 4 weeks ago I suddenly spotted my right foot had constant pins and needles in it. Within around 72 hours it had spread up my right leg and into half of my stomach (again only the right side). I went to hospital and was admitted. MRI was clear for brain and spine showing no signs of lesions or inflammation. The only thing it did show was a few internal slipped discs (but they didn’t appear to be pressing on my spine). Had a lumbar puncture (ouch!) Which again was negative. After seeing the neuro he suspected myelitis as a reason for my symptoms and I had steroids for 3 days. After a week the pins and needles faded and went and I was symptom free for a few days. Then after I started reading about L’Hermittes sign I was a bit obsessive in checking every 5 mins if I had that it. At first it didn’t happen but over the course of days it started but it doesn’t seem like a normal L’Hermittes. Basically when I flex my neck down I get a buzzing/vibration in my tailbone and a shock down through both of my legs into my feet. Nothing happens in my spine which sounds odd for L’Hermittes. Sometimes it doesn’t do it when I flex, sometimes my tailbone just vibrates. Seems to happen worse when I get up in morning and when I’m sat down. But again when I sit down with my legs straight it seems either not to happen or happens mild. Also with L’Hermittes so long as you keep your neck flexed should the sensation continue until you lift your head back up? As I have noticed if I flex my neck and get the sensation and keep my neck flexed it happens then stops whilst my neck is still flexed. I don’t get any pain anywhere just this sensation. Does this sound like L’Hermittes to you? Would you think that I could possibly have MS or is transverse myelitis capable of giving me L’Hermittes? Also I do suffer quite badly from aniexty so I am wondering if I have become so obsessed with L’Hermittes that my body has created it as a plecebo? What are your thoughts and suggestions? Thanks, Chris.
Hi Chris and welcome It does sound rather like your anxiety is causing problems. Transverse myelitis can cause L’Hermittes so having it doesn’t mean anything other than it is related to the other symptoms. That your MRI scans and LP result were negative and you recovered well makes the chance of you developing MS pretty low (from memory, less than 20%) so the very best thing you can do is stop flexing your neck and looking for new symptoms, stop googling and reading, put the whole experience behind you and get on with your life. If it’s going to happen, it’ll make itself clear - you don’t need to look for it. It wouldn’t hurt to take a vitamin d supplement and to keep fit. Not smoking would be sensible too. Other than that, don’t look back Karen x
Thanks Karen. As you can probably tell Google is my worst nightmare. It’s difficult to stop googling things at times - but I shall try I am a little obsessive. Seeing the neuro a week Mon so shall see what he suggest. Again thanks for your comments. Chris
Can I also ask anyone whether L’Hermittes sign goes away or am I stuck with it for life? It’s rather strange as it only goes from my tailbone down into my feet and like I said before, it doesn’t always do it (it does for the majority of time however). Any experiences of this and how long it lasts or has lasted, as I think I’ve had mine for over a week now and isn’t getting better (or worse). Thanks Chris
Some people have it as a relapse and it gets better (mine did) and others are stuck with it. If it’s a relapse, it could last for many months so it is very early days. The best thing to do is to avoid moving your neck/head in the way that sets it off. If that’s not possible or it causes neck pain (not a good idea!) and it is really bothering you, ask your GP for a neuropathic painkiller - it should dampen down the effect.
Thanks Karen. Has yours completely gone now?
I had it for a few weeks, 15 years ago or so - never had it since.
Was you treated with anything to stop it or did it just go on its own? Did you just suddenly wake up one morning and realise it was gone? Don’t think mine is going to stop in the next week or so though… Seeing not a neuro on Mon but a spinal surgeon, not sure what the difference is? Thanks again, C
It just stopped. MS things often do.
Spinal surgeon is probably a neurosurgeon. They do surgery to fix things that are affecting the spinal cord, e.g. disks pressing on it.
Fingers crossed that Transverse Myelitis things follow a similar pattern of just stopping. Thanks for your comments Karen. C