Hi all,
I have a really tough few days- lots and lots of strange sensations and feeling so down (which is not like me).
Since all this started 8 weeks ago, I have had a tingly spine, tingly legs, pins and needles, dizziness (severe) and weak legs.
More specifically, I was also getting episodes where my muscles twich and I then feel a whoosh sensation up/down my spine. It wasn’t always happening when I look down (Lhermitte’s) but was associated more to the muscle twiches or when my legs tingle- that’s how it felt anyway! Over the last few days however this is happening more and seems to be when I look down so now I think it could be Lhermitte’s. But it happens for a short while (20-60 minutes), i feel ‘odd’, sick and nauseous, then it goes away and returns the next day. My question is: does Lhermitte’s last forever? Does it come and go peridically? I thought it happened due to a lesion in the spinal cord so surely it should happen all the time in that case?!
Something else I’ve noticed is when I focus on things close to me (eg, when I am reading/looking at my phone), my eyes seem to focus on my nose a lot, like my eyes are becoming cross-eyed but they aren’t. Sorry, it’s hard to explain! Is this something anyone else can relate to?
Also- a quick update - had my MRI on Monday. It was hard to be still as my leg muscles kept twitching but got through it. I see my consultant next week to discuss the findings.
Feeling overwhelmed, sad, and totally lost at the moment. The ‘why me?’ is creeping in despite my best efforts to stay positive. After 8 years of struggling- studying whilst being a Mum to 2 young children, getting a degree, my first job & buying a house 2 years ago- life gets good, then this happens. Feels so unfair! Sorry for the moan but it’s good to get the feelings out…
Thank you,
Anon25 x
My Lhermittes has periods in which the buzzing sensation is very strong - has periods in which its very gentle - periods when it is gone.
Always triggered when bending neck down (looking down - chin to chest) - most of the time it buzzes down my spine and terminates at my tailbone - however, it can move around, buzz thigh, buzz right big toe etc.
But its very quick - buzz for a second or two - not minutes at a time.
Yep mine is the same as TPATH’s it varies from a strong buzzing down my spine to my tail bone that lasts seconds or to a tickle or as today nothing at all. Find it’s worse when my general MS symptoms are at there worse. If you’re in limbo, I found it helped with Nero appointments to write all symptoms down just as prompt for questions or putting my mind at rest.
Thank you TPATH & Lib67. So it looks like it is something that can come and go. I went to see my GP today to see if she can give me anything for the tingling, muscles twitches etc. She prescribed amytriptiline & was honest enough to say she didn’t think my MRI would come back normal. Can’t stop crying 
First of all (((((hugs))))).
It is absolutely all right to feel miserable and have a really good cry. Don’t feel remotely guilty for letting the brave face slip or for having a moan - you are entitled!
You’ll have to take my word for it, but you will be OK. Sh*t happens, we struggle with it, we find a way to cope and then we carry on - because life goes on and we owe it to ourselves and our loved ones to make the most of it. Thankfully, there is a lot out there to help us cope, like meds, physio, specialist nurses and aids, so we’re not on our own.
Now L’Hermitte’s. Like the others, mine only ever lasted a few seconds and was caused by bending my neck. I don’t know if it can last as long as your’s does, but it sounds like you have several symptoms which might be difficult to separate so perhaps it’s L’Hermitte’s plus a few other things?
Hopefully the amitriptyline will help!
Karen x
Thank you so much Karen- I needed the hugs today & boy did the the brave face fall! Cried in front of my husband, my GP & my aunt & uncle after 9 weeks of staying positive! I don’t know if it is lhermittes or not- doesn’t really buzz, more of a whoosh sensation & happens sometimes when I’m not looking down as well! The whoosh only last seconds but it comes and goes for up to an hour. During these episodes i feel weak, nauseous & feel a strange tightening in my back. I also need to wee a lot. My consultant was confident it wasn’t MS because I had no abnormal reflexes, I could feel smooth/sharp on my legs and even said he was 99% sure my MRI would be clear. Then my GP (who is very nice) says she thinks it is MS because another patient of hers was diagnosed with it & she had similar symptoms to me. What a painful crazy waiting game this is…1 more week & I’ll know what was on the MRI. Still hoping for the best, even if I’m being unrealistic Thank you to everyone xx