L'hermittes certainly is one of the weirdest symptoms for sure, and I totally agree. I did not get the shocks, but did have the buzzing upon flexing. Presenting symptoms can and do vary from person to person.
This doc sounds super solid to me. He basically acknowledges MRI does not pick up everything and mentions CIS (first instance) due to what you are experiencing now.
However, if CIS was or becomes a definite for you, (remember it's a clinical dx) then the doc should be willing to treat, however, since no offer, there may be some reluctance (you can ask the doc this question) i.e., nothing is seen yet on your brain and c-spine. Not enough strong evidence, basically to determing, thus the wait approach.
It's my opinion that this is ok. However, you should be followed. Because if definite CIS or you develop MS (not everyone does)disease modifiers work their best at early stages.
As for the evoked potentials. This could be beneficial to establish a baseline (just my opinion). Again, giving the doctor his due credit - he may have reasons for this, for instance he could have no concerns based on exam results. This too could apply to the LP. LPs are considered invasive as compared to all other testing where MS is concerned.
It's important to get this right because the dx will dictate the treatment. These things can be caused by many things other than MS.
Sadly there really is nothing that can be done right now to get rid of the lhermittes. You'll find the longer it lasts the better you get at not putting your head down. It's crazy. Even though mine subsided I still find myself not immediately putting it down to look at something. I use my eyes alot first.
Thanks for joining us and trusting us to thoughts.
I agree 100% with everything Shell said. You should feel good that your doctor is looking for answers, rather than patting you on the head and dismissing you :-)
I agree there is probably not a lot that can be done at this point but wait and see; this is where I was at when I had Lhermitte's sign in 2006 but no other symptoms and clean MRI.
My only question about this doc that I mentioned to Teddie is the doc's statement that he'd never seen Lhermitte's as a presenting symptom and it's usually a sign of very advanced disease. It was my presenting symptom, and my neuro didn't find that to be unusual. Further, a UBC study I've mentioned here before found that 20% of those with Lhermitte's had it early in their disease course. That's a substantial percentage.
I'm curious whether anyone else has had Lhermitte's early in their disease, and, whether anyone was told it usually only occurs in advanced stages of MS?
I was never diagnosed with anything, but I do have Lhermitte's (among other problems). The Lhermitte's began only about half a year after my other weird symptoms started. (Thirteen years ago.)
What I will never understand is, if MRIs do not show any other cause for Lhermitte's such as tumor or cervical problems, and you don't have cancer, neck injury, etc., what else could cause it in a relapsing pattern over 13 years!
Teddie: I agree with others that Lhermitte's can indeed be an early sign in MS. Maybe your neuro just hasn't happened to see it early in his other patients? But he should still know better, it seems. The neuro who originally told me I had MS in 2000 (and later retracted it despite never doing spinal tap or evoked potentials, except auditory) said it most definitely when I told him about the weird sensations in my lower body when I bent my head down. Good luck to you.
Many thanks for the input all. I am glad to hear the doc appears to be on track. I am seeing another neuro next week on gp recommendation but it puts my mind a little more at rest until then. I have been working at trying to avoid neck flexion. Unfortunately this causes me to look like Frankenstein each time someone walks into my office and i turn to look at them.
L'Hermitte's is such a unique and distinct sensation it seems those who suffer can easily identify the symptom's name just by reading a description. As it arrives without pain, I imagine many just write it off initially as something minor. This is certainly what I did - I put it down to too much time working at the computer.
I admit to being surprised that something which is undeniably life changing (like MS) can present with such a peculiar/subtle sensation like LS. However, I see now that this is clearly the case. The neuro was wrong in his comment and it can be seen in the (albeit relatively few) studies on LS & MS. Perhaps he didn't want to cause unnecessary alarm until the findings were more definitive.
I spoke to an orthopaedic surgeon who said that he has seen it caused by Scoliosis more than once (although it was not the direct cause in both cases). He said I should take that as an indicator that it could be caused by 'many, many things'. I'll keep posting.
I experienced this exact thing for at least 3 years before I was diagnosed with MS. I never sought treatment or looked into it, but it all makes sense now. I would lie in bed and tilt my head up and get the shock. For some reason, I stopped questioning it. When I was diagnosed, they found several lesions on my brain and spine and now, my spine is screwed. I have to be so careful with how I move my head so as to not send my body into a fit. I am taking Carbamazepine now to help alleviate the acute symptoms.
I am Caucasian female, 31 years old. I was diagnosed only 3 months ago. i just wrote a piece about my experience leading up to my recent diagnosis:
Wow, thanks for that Amy. You've been through a lot.
In the 3 years was LS always there or did it comes in waves/bouts?
Glad to read you've been able to control your symptoms.
It was one of my beginning signs too, in fact, I've had that one since childhood, come to think about it.
I think your doc needs to brush up on neurology, especially MS. Sometimes mine doesn't bother me and then it will bother me for days and days and then go away for while and I forget it and then it rears its head again.
see table 2: Table 2
Presenting Symptoms in Multiple Sclerosis Patients
Males = 2.3%
Females = 1.6%
Total = 1.8%
Teddie, very interesting what the surgeon said about scoliosis and Lhermitte's. Did you have an MRI of your neck? What do you know about your scoliosis?
I have scoliosis (since childhood) but only in my thoracic and lumbar areas, not the neck. I even went to a scoliosis specialist (an orthopedic spine surgeon) and asked if the Lhermitte's could be caused by my scoliosis. He said no, that even if it were caused by some structural neck problem (and he said my neck MRI was normal or at least showed nothing to cause the Lhermitte's), then the Lhermitte's would remain in one place and not appear in different places over time, as mine does.
It seems doctors are all over the place in their opinions.
Ηi Ted. I am 33 and i experienced LS for the first time on August 2012.I soon had an MRI (brain and spine) which was negative concerning the brain, but with one spinal lesion, that caused the elecrical sign i felt.The neuro did not make a diagnosis, he told me it might be a damage by a virus, or injury without excluding ms.This symptom remained until December.Since then, it has disappeared.For the time being, i am really fine, but i dont'really know what it is and i live in the anxiety...
I know that LS can be caused not only of the demyelination of a region, but it could concern disc herniation etc, but i assume that, in that case, it would be present at the MRI.
Maybe you should repeat the spinal MRI. And try not to be anxious.I always keep telling that to myself.
It came in waves and was subtle. I started noticing it when I would be lying on my back in bed and just move my head up to look at my toes. Sensation down through my entire body but it was only when I moved my head in that way so I ignored it.
Nancy - I have slight scoliosis of both thoraric and lumbar spine which was picked up by Xray. MRI of cervical spine shown slight reduction in lordosis.
The orthopaedic surgeon said LS wasn't directly caused by scoliosis but it may have contributed to it. I cannot recall the exact description but it had something to do with restricting blood flow? (I should try and find out again rather than guess).
I know about the anxiety you mention! I saw another neuro yesterday and he has referred me for lumbar puncture and visual evoked potential tests. If these come back negative then he will be 95% sure that I do not have MS 'at this current time'. Might be time to get the finances/insurances in order just in case...
Thought I'd share an update for the purposes of this thread I started sometime back.
I had the results from the visual evokes test and lumbar puncture.
- Visual evokes were normal.
- Lumbar puncture, much to my surprise & disappointment, showed oligoclonal bands in my CSF.
I've moved from possible MS to probable MS. Neuro's booked me in for MRIs in 6 months and told me to watch out for sensory symptoms.
I do not get a diagnosis until evidenced relapse.
Well doublevision1 - turns out l'hermittes is likely to be presenting of MS afterall......
Hi Teddie, I'm sorry to hear how your situation has evolved. I understand why a definitive MS dx won't happen until evidence of a second attack, though based on what you present with so far, it seems you'd meet criteria for CIS which Shell mentions above. More and more, neuros are opting to treat at the CIS stage as it has been proven that doing so can stave off a definitive MS dx for years in some cases. Is this something your neuro discussed with you as a possible option?
Teddie... This board is phenomenal as you can see with all these awesome answers .. I am not as well rounded with information however I do agree with double Vision on the treatment at CIS stage.
I also wanted to say I am recently diagnosed however I have had LS for so Long I don't remember not having it ... It is my normal... It does get worst or better depending on heat, stress, sleep etc...
No, the neuro said that he didn't think it warranted treatment at this stage. I was in no real shape to argue with him at the time. I was trying to come to terms with the news of the LP results and just stumbled out of his office in a daze.
Thanks for the link and the comments. I'll look more at treatment at CIS stage.
Glad to see the update Teddie - Though I do feel CIS should be treated based on the facts of studies. If you are ok with this, once you get over this initial phase, then ok. But, if not, a second neuro, an MS specialist would likely treat you. Early MS, CIS responds best to the meds. There is solid literature on this.
Nice to see you pop in.
AAAAh, on 2nd look through what you posted back in March, I see you did not have lesions at the time. That could be a strong reason for the hold up. Still a 2nd opinion never hurts. 6 months is good. Have you had any lessening of the l'hermittes?
Hi Ted, as others have mentioned, CIS diagnosis can lead to DMD therapy, and whether or not you decide to go that route, there is tremendous support here so don't be a stranger. :-)
Good luck with everything,
I have been in a relapse for past couple of months and experiencing the worst LS since my diagnosis in 1999. It is so disturbing because it does not let me forget I have MS. This has been ongoing and fairly constant for weeks. i just came back from MRI of cervical spine which my Dr recommended since my MS has been confined to the brain will know if there are lesions in spine tomorrow when I get the report and see Dr.
Hang in there,