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

[Cann1980]

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...

Cann

[doublevision1]

http://www.nationalmssociety.org/ms-clinical-care-network/clinical-resources-and-tools/core-curriculum/diagnosing-multiple-sclerosis/clinically-isolated-syndrome/index.aspx

[doublevision1]

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?

[amywhitestripe]

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.

[Ifianassa]

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.

[Nancy T]

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.