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

[doublevision1]

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?

[sllowe]

Hey Teddie,

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.
-Shell