Hi everyone. I began experiencing Lhermitte sign in 2006. Had MRI etc and was told possibly early onset of MS. Had Lhermitte on and off all that time but has gotten very bad this last 6 weeks or so. Also now in last 4 weeks, my skin on my right side has gone numb - especially on my tummy and right foot which constantly feels freezing cold. I also keep getting the feeling that my legs don’t belong to me - like they’re too heavy and clumpy to be mine!! My hands keep getting tingly too. I’ve been diagnosed with ME for 3 years now and haven’t worked for 2 years because of the fatigue and pain I’m constantly in. I’ve seen a neurologist 2 weeks ago who was far too ready to put these symptoms down to my ME although he is sending me for an MRI. Can anyone give me any advice on these symptoms? The neurologist has said he doesn’t want to see me again unless the MRI shows anything although he doesn’t expect it to see anything untoward. I feel a little fobbed off to be honest and my numbness is definitely getting worse as the days go by.
Hi Pinklady, I’m surprised the neurologist hasn’t taken your symptoms more seriously as they definitely could point to MS… although of course ME symptoms can also be very severe and similar to MS symptoms but I haven’t heard of Lhermitte being associated with ME.
I was in the same situation as you a few years ago. Diagnosed with ME. I was at that point sent for an MRI that showed ‘bright spots’ although the neurologist was still saying it was unlikely to be MS (even though the radiologist had flagged up 'possible MS). I then had a lumbar puncture and at that time they were able to diagnose MS.
All you can do for time being is wait for MRI and see what the results are. I know this is frustrating for you especially as you have difficult symptoms and pain… but however much the neuro is fobbing you off he can’t ignore MRI results if they show anything.
Unfortunately there is not a whole lot that helps with numbness. You could ask your GP if you could have Amitriptyline which can help with tingling and pain. It’s an antidepressant but is used for nerve pain in smaller doses. Also I suggest you rest as much as possible as your symptoms will be worse if you are tired or stressed.
Take heart though… however frustrating this all is, you are being sent for an MRI and this can be the first step to a diagnosis.
Take care,
Pat x
It all sounds horribly familiar! The best thing I’ve found for freezing is wrapping up in woolly/fleecy blankets and, if I still need more, using an electric heat pad. The warm signals override the (fake!) cold signals so it’s a lot less unpleasant.
Other than that, I’m afraid it’s a waiting game. Hopefully your body will fight off this new attack and the MRI will show what’s needed to make the neuro pay attention!
Karen x
hi
i know exactly how you feel, i have been ill for a few years and was initially told likely ms then due to clear mri that was dismissed. now, because i have pestered people in an attempt for some support i have been give the ME label.
i have wondered if it “fits” and the only evidence i have is that i have no reflexes on left side and they’re barely visible on my right but that does seem to point to ME, i think that with ms the reflexes are more likely to be over active than underactive although it can vary greatly., i know a friend of mine has ms and has dull reflexes. the more i look at the different info out there the more confused i get, the problems arise when the problems cant be seen i think, or thats how it is for me. yes i walk with a limp but anyone can do that im talking about clinical evidence, lesions etc.
i had decided to just carry on going to the docs so at least the problems i was getting were being recorded, but the gp got fed up with it and decided to refer me to a neuro again, whereas i wanted to try other routes like an eye clinic and get evidence that way.
theres not anywhere near enough knowledge of either ME or MS but from my experience and with what ive read with ME you’re more likely to be labelled a hypochondriac.
before my mri the neuro told me he thought that my lesions were in three places in accordance with my symptoms, so he must have been fairly confident to say that but because they have to abide to the mac donald criteria diagnosis can seem to go on forever and sometimes some people may never get a diagnosis of MS, even if the symptoms are the same as that of a person to has a definite diagnosis.
have a look at the hummingbirds foundation for ME if you havent already, its quite interesting. really there are so many things it could be. there are also reasons why a lesion why they may not show, they could be really too small to show or even the strength of the scanner may not be the optimum one for showing lesions .
i dont know anything apart from what ive read over the years but the most important thing is to get to a sense of acceptance that you may not get the right answers and this is the place to support you with that as there are so many of us like you.
you’re really in the best place for support, i dont know what i would have done if it wasnt for this site.
do message me if you want to, but do come here to have a moan or even just to offer some kind words to someone in the same situation, we all have to try and help each other. i hope this message is ok, its been difficult to write with a very noisy grandson in the background. lol
best wishes
mandy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
i too have Lhermitte, its getting worse,everytime i move my head its there, Ive been dx with fibro and cfs
Hi Pinklady x
I think I get L Hermittes sign but it changes in intensity!
Also I can ‘make’ it happen myself by bending my neck forward and it doesn’t happen ‘every’ time I bend my neck forward!
It tends to happen with me ‘out of the blue’ for example often I’ll look down to rinse my mouth after cleaning my teeth and I’ll get an electric current like feeling go down to between my shoulder blades to my waistand even up my head on the left slightly.
Other times it can be more violent for example I have ‘heaved’ in the past when being sick and had a really big one that goes down my back into my legs and even down my arms - that’s also like an electric shock - but painful - like the ‘voltage’ has been turned up!!
I also get it when I sit up straight in bed and look down at my laptop - that brings on a mild pulsing/buzzing into just below my shoulder blade
On occasion I’ve had it the other way around when someone has accidently knocked my foot I get the shock right up my spine - I don’t know if this is somethng totally different or not!
Anyone else experience it like this? Or is what I’m experiencing NOT typical of L’Hermittes?? xxxjenxxx
Wow - everyone is so knowledgable and helpful and supportive. Kizzydane - my L’Hermitte sounds very similar. It’s not there all the time and does vary in intensity although it is very bad at the moment. It’s worse for me after exercise - even a short walk or going upstairs. I also hadn’t appreciated the many people who are also dx with ME. There does seem to be a huge crossover - both are difficult to dx conditions and have many variations. I’ve decided to pursue it with the neuro even if my MRI is clear as MS doesn’t always show on an MRI from what I’ve read. My numb skin is getting much worse and I’m now worried I’ll start to fall over as my feet are geting really bad - oh joy x