LHermittes agony...

[teddie999]

Hi all

For just over a month now I have been suffering with L'Hermitte's Sign.

Electric shocks, vibrations, numbness/tingling etc etc all on neck flexion. It radiates through different parts of body (no more than a second) - varying from little fingers & trunk (underneath pecs) to inner thighs & inner ankles. I get it on both sides.

Very strange sensation and extremely unique to any else I have ever experienced.

To summarise:

- 32 male caucasian
- X-ray showed mild scoliosis C & L region
- C spine MRI normal
- brain MRI normal
- blood tests all normal (b12 was 1150)
- Neuro confirmed LS symptom but nothing else from physical exam

I have absolutely no other symptoms. This is despite having been reading about MS online for the past month...(!)

I am trying to establish whether this is presenting of MS. I am told:

"If LS persists you have some challenges as early MS dx can be tricky where isolated symptom. Lesions may be too deep to be picked up by regular MRI. FLAIR brain MRI (o gadolinium enhanced ) is most sensitive way to detect lesions."

The neuro said there's nothing he can do for me right now. I should wait to see if it develops. As my LS is through little fingers, trunk, inner thigh and inside right Achilles (strangely) I requested MRIs of thoracic and lumbar spine. The neuro said its not worth it and I should wait.

He also said a spinal tap and evoked potential tests were not worth it either. I seeking a second neuro's opinion.

I was wondering if there were many more out there who's MS presented with LS. I know of one user here already - but the neuro I saw yesterday claimed he'd never seen presenting LS and it was usually a very advanced symptom of MS.

Appreciate any advice.

Ted

[teddie999]

https://www.google.com.au/url?sa=t&rct=j&q=&esrc=s&source=web&cd=12&ved=0CJwBEBYwCw&url=http%3A%2F%2Fwww.springer.com%2Fcda%2Fcontent%2Fdocument%2Fcda_downloaddocument%2F9781588290335-c2.pdf&ei=AkpKUfb0NvCiiAft9IHYCw&usg=AFQjCNF-u3h5F3RaPuT2lT4xOUjCJsISvA

see table 2: Table 2
Presenting Symptoms in Multiple Sclerosis Patients

Lhermitte’s phenomenon
Males = 2.3%  
Females = 1.6%
Total = 1.8%

[SarahL2491]

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.

[teddie999]

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.

[amywhitestripe]

Hey Ted,

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:

http://whiteliesprivateeyes.blogspot.ca/2013/03/ms-white.html

Amy.

[teddie999]

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.

[Nancy T]

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.