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Is Lhermitte's a permanent MS symptom?
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Is Lhermitte's a permanent MS symptom?

Hi !!! I hope you can help me. I have 2 questions that really bother me.  
   Does Lhermitte's ever go away like other MS symptoms if it's relapsing-remitting form? It's my single symptom since the diagnosis for 7 months now and it doesn't seem like it's going to go away. It drives me nuts !!! It also gives me a sinus pressure when I bend my neck. It's so annoying...
   I also have another question. How long does it take for new lesions to show up on MRI or old ones to grow if you aren't on MS drugs? (my doctor chose wait and see approach that freaks me out). My first MRI 6 months ago showed several old non-enhanced lesions in both spine and brain, just got follow-up MRI results and nothing has changed since 6 months. I didn't expect that result because I wanted to start Avonex because of Lhermitte's and should I have new lesions, but now I have to wait and see another 6 months again...I am afraid to waste any time...I wish I could ask my MS specialist all these questions but he isn't available till April, he only found time to announce MRI results...It's so frustrating !! Thank for your replies !!!    

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Avatar_f_tn
WELCOME TO OUR CYBER FAMILY.

FOR THE LHERMITTES, I HAVE HAD THEM AND THANKFULLY THEY DISAPPEAR.I DO HAVE RESIDUAL SYMPTOMS THAT HAVE LINGERED SINCE ONSET OF THIS DISEASE.

I KNOW THATS NOT REASSURRING.HOPEFULLY THEY WILL DISAPATE AND GIVE YOU RELEIF.

FOR AVONEX, TO MY UNDERSTANDING THE QUICKER THE DMD THE BETTER THE OUT COME.HAVE YOU ONLY HAD ONE ATTACK? SOME DRS TAKE THE APPROACH WE'LL WAIT ON THE DMD  UNTIL A SECOND ATTACK OCCURS.

I CAN UNDERSTAND WANTING TO START THE MEDS,EVEN THOUGH YOUR MRI SEEMS STABLE,IT DOESN'T MEAN THAT SMALL LESIONS AREN'T FORMING.

I'M GLAD YOU DECIDED TO JOIN US.

T
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198419_tn?1360245956
Hi, sorry for your dx.

Welcome to the forum.  I'm sure you will get mixed reviews with the L'Hermittes.  Mine has not left me, and has only changed in the way it vibrates.  The sensation itself, can be different from person to person just like MS.  

Although a lot of things are similar, there are many differences.

Did you discuss the meds with your Dr yet? I see you say April visit, and we have a good thread I can look for that was written up about the meds, that may hold you over.

I could be wrong in saying this, but don't count on the DMT's taking the L'Hermittes away.   It's due to spinal lesion, the inflammation process, etc.,

Stick around, there is a lot to learn here,
be well,
SL
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198419_tn?1360245956
HEY T -

I think our post went up at the same time. . .Want to ask you, did they give you anything ref the L'Hermittes, or did they go away on their own?

SL
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195469_tn?1388326488
The Disease Modifying drugs will NOT cause your symptoms to be cured.  The reason for the DMD's is to help reduce the attacks or frequency of the attacks.  They have no affect on current symptoms.

The L'Hermittes, I was told, was due to my spinal lesion.  I have been lucky.  It only flair-ups when I am in a flair-up.  With most people, the symptom goes away until things are active again.

I totally understand why you want to get on one of the DMD's right away.  Who wants to wait for a second attack, if the doctor is sure that it is indeed MS.  It sounds like you are not in an active flair-up according to MRI, so you may be experiencing symptoms that have just not gone away since your first attack.

Sorry I couldn't have been of more help.  We are SO glad that you have posted with this question.

Heather  
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Avatar_f_tn
Yes, my doctor is waiting for a second attack. As to Lhermitte's, he prescribed Gabapeptin...I took it for a week and it didn't do anything. I just don't like to take drugs in general, especially if I am not in pain.    
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Avatar_f_tn
MY LHERMITE'S FINALLY WENT AWAY WHEN THEY DONE MY SECOND ROUND OF SOLU-MEDROL.I SUFFERED WITH THEM FOR MONTHS.

I GET THEM WHEN FLAIR -UP'S RETURN.

T
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195469_tn?1388326488
Tne Neurontin (the drug name) you are on, can be good for symptoms like your L.Hermittes.  Please give it a chance to work.  It can be an excellent drug at controlling some of the sude effects from spasms and sensory symptoms from this stupid disease.

No one LIKES to take drugs, well at least those of us that are sane and not addicts, I suppose; but if a drug can work to help improve your life, I am one that says, thank god I live in a day and age, where there ARE drugs to help me make it through this yucky disease.

Feel better Anya.  I know what a pain in the rear end all fo this can be.  Maybe look at it another way.  You may have L'Hermittes, but at least you are able to walk.  That always helps me get through some of these things.

Hang in there sweetheart and like I suggest, give the drug a chance.  It really can be a great drug for so many peopel with few side-effects.

BIG (((HUGS))))
Heather
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Avatar_f_tn
Wow, I didn't expect to get so many replies. Thank you for your help.
  Unfortunately, I can't give the Neurotin (Gabapeptin) another chance, because I threw it away 5 months ago. I felt like it was destroying my liver...I have this weird attitude towards drugs :O)  
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Avatar_f_tn
I FELT THE SAME WAY YOU DID ABOUT MEDS.

I SOON CHANGED MY MIND WHEN SYMPTOMS GOT OUT OF CONTROL AND I COULDN'T BEAR THEM.

WHEN YOUR TAKING CERTAIN MEDS MOST NEURO'S OR GPS WILL DO A LIVER FUNCTION TEST TO SEE IF YOUR MEDS ARE EFFECTING YOU.

T
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195469_tn?1388326488
Boy my typing is going to h e l l in a hand basket.  I guess I have to admit, that due to the past weeks of my own life, that I really am exhausted.  Emotionally I feel spent.

Guess I will spend the rest of day remembering what a wonderful and loving daddy I had and thanking my lucky stars for such a great life with him.

Anya, try to get another script for Neurontin.  Like T says, doctors are pretty good at keeping check on your liver function and this one drug does not have the side effects on the liver, like some drugs do...so give it a try again.

Nothing to lose and everything to gain.

Thanks for your input T as always.  You give such great advice.  What would we all do without you?  I DO NOT want to find out sweetheart....

HUGS,
Heather  
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Avatar_f_tn
I WAS DEAD SET AGAINST NEURONTIN AFTER ALL THE BAD PUBLICITY IT RECEIVED AND DIFFERENT EXPERIENCES I HEARD PEOPLE TALKED ABOUT.

I'M GLAD I FINALLY MADE MY OWN INFORMED OPINION,BECAUSE IT HAS HELPED WITH THE LHERMITTES SYNDROME,AND THE BURNING PAIN I GET IN MY RIGHT SIDE.

THE RELEIF IS WELL WORTH IT.ITS NOT A CURE ALL BUT IT SURE HAS TAKEN MOST OF THE PAIN AWAY.

WITH MEDS IF THEY CAUSE PROBLEMS WITH THE LIVER THEY'LL DO A FUNCTION TEST AFTER ONE MONTH AND THEN 3 MONTHS THERE AFTER.

T
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Avatar_m_tn
I have had Lehermittes symptom for three years since I had Sudden Hearing Loss in one ear. I have had several MRI exams and no sign of tumor. There is a large cyst, probably since birth and all regard it as insignificant. One Neurologist said he would do a spinal tap to see rule out MS. I declined since there is no cure and why take any risk on a spinal tap. Another Neurologist is confident it is not MS. But no one seems to be able to give an explanation or suggestion other than give it 3 more months. It is now three years and no improvement. Anyone out there with similar experience or suggestions?
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1260255_tn?1288658164
I know that this is an old thread, yet I am happy it was resurrected, as I have had the same question.

NPR had a segment on MS the other day and part of the discussion was that many symptoms may occur years prior to the first "attack". If in fact, I do have MS, L'hermittes was my first symptom, occurring in my late 30's for a period of about three years. When it first happened, I was living in Antigua, without much available in terms of the internet or other medical resources. It did scare me, as it was so bizarre and so strong, but after having it happen quite a number of times without any other apparent ill effect, I passed it off as another part of body changes.

It has been well over 5 years since I the last time I experienced this. Now I get a strong muscle spasm on the right side of my neck that almost "cracks", but it is not L'hermittes.

The MRI of my spine was done after the zapping stopped on a T1.5 machine and showed no lesions.
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152264_tn?1280358257
Same here... sudden unilateral hearing loss, no tumor, Lhermitte's and dizziness and numerous other symptoms for many many years. It all started 1999 except the dizziness started much earlier.

Like you, I got NO answers, for any of my symptoms. I got a Baha for my deaf ear, though, and I love it. :)

Have had Lhermitte's on and off since 2000, no explanation. I had a spinal tap tried twice but they couldn't get fluid out.
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Avatar_f_tn
I experience Lermitt's sign, since September.I had an Mri showed one spinal lesion not on the whole activated- as it said -  and nothing in the brain.I am 33 years old, my doctor hasn't diagnosed me (yet?), since he is waiting for another symptom.I don't know what it might be and always wondering. The lesion always leads to ms diagnosis or it could be only that showing something else happening?Lesion has other causes as well? Or if it turns out to be ms, lermitt'sign can be a prognostic sign as well (for good or bad progress)? Thank you a lot!
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