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Le Hermittes

Hi wonder if any one has advice on this symptom,

I have had this now for about six months, neuro dx this about 4 months ago and expected me to more or less recover putting it down to a relapse. He has put me in for another mri which i have on tuesday as he said he's concerned about a lot of little niggles (his words) doesnt feel like little niggles,

my symptoms are worsening fatigue, le hermittes (weird sensation down my leg) worrying me a lot as it has become worse not better and i have noticed my leg giving way when walking although not to the extent of falling over, Yet!

I am worried sick i will lose power in my legs and not be able to walk nervousNeuro mentioned a lesion on my spine which has lost the myelin, he also said i may need to go on tsybri  im only in my 40's and am working although ive had to reduce my hours since this relapse. dx 2002 RR not ready for this, not yet

Am i worrying unecassarily, i hope so.

Any advice please scared2  xx

I've had episodes of Lhermittes, I usually call it the head neck thingy, as in when I bend my head forward then I get an electric shock travel up from my feet.  Worryingly sometimes I find it quite nice, others it frightens me to death.  My neuro told me it was not a sign of relapse just a sign of inflammation.  I've had steroids for it in the past and to be honest it doesn't go any quicker with the steroids.  I think my last episode was this time last year lasting a month or more.

Tysabri doesn't have to mean an end.  I'm hoping for me its a beginning.  I'm 37, I've been signed off sick from work since my mat leave finished at the end of October last year.  After lots of investigations I was told in March that I needed Tysabri it was my last chance saloon, and at that time I grasped it with both hands as I felt really as if I'd hit rock bottom.  Its not an instant cure but its helped with the fuzzy brain, already.  I'm slighly less fatigued.  Not made a difference to my lead like legs but I'm hoping.  And I'm hoping to go back to work later in the year as long as they don't chose to retire me before then.

Hi Sparkly

i was also told it's caused by inflammation x I get it from the neck down - not all the time - it comes & goes with me - it can be 'gentle' like an electric tingling when I'm looking down - say at my laptop. But then if I look down suddenly like when I heave or when cleaning my teeth - then it shoots all the way down my spne and even into my arms and hands.

ggmarch - you are the first person I've found that also gets it going from the feet UP the body!!!! Especially if someone accidentally taps my foot xjenx

Hi I've had Lhermittes, I've got PPMS and a couple of years ago I started getting electric shocks up the front of my thighs and into my groin. It was very sharp and painful. My MS nurse suggested increasing my Gabapentin and it did the trick, it disappeared after the third day of a higher dose.

Lynne xx

I always assumed that everyone got it going up the body.  Some days even brushing my hair can set it off, just the smallest tap with the hair brush.  But as I said I've not had it for nearly a year which is the longest I've been without it for years.

Every time my MS gets a bit active I get L'Hermittes routinely when I bend by head forwards.  No unpleasant for me (I'm lucky there, I think), just a kind of weird rush of electric-y stuff down both legs. 

It's horrid when MS starts asserting itself when you would rather it stayed quiet - and it sounds as though yours is doing that a bit.  Clearly your neuro wants to keep a close eye and, if he/she feels you need something to keep it at bay, to make sure you have the opportunity.

My MS was playing up badly for a while and so I went on Tysabri.  Fingers crossed, everything has quietened down now.  No one wants to hear that their MS has got more active.  But hey, we are all used to dealing with bad news, are we not!

Alison

 

First L’Hermittes; L'Hermitte's sign describes electrical buzzing sensations in the limbs and body brought on by movement of the neck. These sensations are known as paraesthesia and include tingling, buzzing, electrical shocks, partial numbness and sharp pains. L'Hermitte's is most often triggered by lowering the head so that the chin touches the chest. The sensations usually only last for a second or two. It has been called the "barber shop" symptom because it is often evoked when the hairdresser asks you to lower your head when he or she shaves the back of your neck.

L'Hermitte's is associated with a number of conditions including arthritis, cervical spondylosis, disc compression, pernicious anaemia, tumours and multiple sclerosis. In many cases, the cause cannot be found.

Because the cervical spinal cord is a frequent target for multiple sclerosis it is a very common symptom of MS. Aproximately two thirds of people with multiple sclerosis experience L'Hermitte's symptom at some point during the course of their disease.

In MS, L'Hermitte's is an indicator of lesions in the cervical spine (the part of spine in the neck). Movement of the neck causes the damaged nerves (the demyelinated neurons) to be stretched and send erroneous signals. The symptoms can occur anywhere below the neck and many people with MS find that it moves around their body from one day to the next.

I’m amazed that as with the MS Hug the MSS has no or very little info for members for quite common symptoms.

 

Your ‘niggles’ your Neuro is concerned over can really only be lesions he has seen on the MRI.  To explain every instruction to the body comes from the brain.  These instructions travel along pathways, nerves until they reach the desired location.

 

There are two distinct nervous systems; the Central Nervous System (CNS); Brain and Spinal Cord and the Peripheral Nervous System all nerves leading to almost every part of the body.

 

The Spinal Cord is more or less a thin; bony; flexible tube that carries millions of nerves; very easy for a lesion to hide.  The Brain (especially mine) in comparison is a wide open space.  This is a map of the Spine  http://www.makoa.org/scimap.htm if a lesion is in a part shown it may cause problems as shown.

 

If you need help at work; taxis to and from; furniture; infastructure don’t forget ‘Access to Work.’  http://www.direct.gov.uk/en/DisabledPeople/Employmentsupport/WorkSchemesAndProgrammes/DG_4000347

 

Your Neuro sounds very good; unfortunately it’s a case of trial and error until they find something to settle your MS attacks down.

Good luck; I know it’s difficult but try not to worry.

 

George

Hi again, just to say a big thankyou for all your responses,i dont feel quite so alone now,

Yes i get this sensation-not pain when i turn my neck, the neuro probably did mention inflammation and demylination but this is another symptom that has worsened, my ability to remember detail and follow the thread of conversations. even now ive read through all the replies i cant totally remember what i want to say in response to individual replies. (sorry im wittering!)

I do understand the nature of this beast but am feeling very frightened of losing my legs, im worrying about my job (driving is a lot of my job) how will i pay rest of motgage? where will we live? i love my home , spent a lot of money and time on it and we may lose it, just as life should be getting easier this shitty monster seems to be taking over.

Sorry for ranting im not normally like this

take care all xx

 

L'hermittes will not lead to losing your legs.  Mine tend to be a bit cotton wooly these days but I still walk a good bit each day (although the 3 mile route march that my friend put me through was a bit much, thank god for the pram). 

I also understand how you are feeling.  I got to the stage around christmas time when I thought I was never going to feel better, that I would be stuck in limbo land for ever and no one really understood how I was feeling.  It actually took the occ health doctor to look at me and tell me she was genuinely concerned for my safety looking after a home and cooking etc without any help to realise that someone really did believe me and what I was experiencing was genuine.  Actually made me feel better, then I got the latest scan results and got started on Tysabri and think if I contine going in the right direction (and not doing stupid things like accidently cutting through the lawn mower cable, good job I was wearing my crocs) that I might actually be able to return to work before the 12 months is up.

Hi, I'm not sure if this could be what I'm experiencing.  The last few days I get an intense shock like feeling down my spine into my left arm, both legs, though left is worse, into my heal, and then it seems to shoot back up my left leg.  Its really quick, it literrally feels like someones charging me with electricity! I feel like one of those cartoon characters buzzing and sparking for a couple of seconds!  But what I also wanted to ask, does anyone know if it can affect your bladder? I've wet myself a couple of times with it, but wondered if that's just coincidence? I've got problems below the waist in general at the moment :(  but now also fizzing left arm.  I'm not yet diagnosed, my last scan showed lesions and a cyst, I've got a scan with contrast end of June, a load of blood tests later this week.  My GP's on holiday.  Should I inform my neurologist, or just wait and see?  Any advice greatly appreciated!

 

[quote=“ggmarch”]

L’hermittes will not lead to losing your legs. Mine tend to be a bit cotton wooly these days but I still walk a good bit each day (although the 3 mile route march that my friend put me through was a bit much, thank god for the pram).

I also understand how you are feeling. I got to the stage around christmas time when I thought I was never going to feel better, that I would be stuck in limbo land for ever and no one really understood how I was feeling. It actually took the occ health doctor to look at me and tell me she was genuinely concerned for my safety looking after a home and cooking etc without any help to realise that someone really did believe me and what I was experiencing was genuine. Actually made me feel better, then I got the latest scan results and got started on Tysabri and think if I contine going in the right direction (and not doing stupid things like accidently cutting through the lawn mower cable, good job I was wearing my crocs) that I might actually be able to return to work before the 12 months is up.

[/quote] Thankyou for your reply, im probably worrying for no good reason.

its good to hear you say that l’hemittes wont nessacarily make me lose my legs, i know i worry about things before the worst happens, just the way ive always been. Ive got mri tommorrow, in a way i hope im given tsabri, (refused medication before not ready to accept its progressing)Hope your feeling better and good luck with getting back to work.

ps be careful with that mower !

Once again thanks for reply helped a lot xx

[quote=“hunny”]

Hi, I’m not sure if this could be what I’m experiencing. The last few days I get an intense shock like feeling down my spine into my left arm, both legs, though left is worse, into my heal, and then it seems to shoot back up my left leg. Its really quick, it literrally feels like someones charging me with electricity! I feel like one of those cartoon characters buzzing and sparking for a couple of seconds! But what I also wanted to ask, does anyone know if it can affect your bladder? I’ve wet myself a couple of times with it, but wondered if that’s just coincidence? I’ve got problems below the waist in general at the moment :frowning: but now also fizzing left arm. I’m not yet diagnosed, my last scan showed lesions and a cyst, I’ve got a scan with contrast end of June, a load of blood tests later this week. My GP’s on holiday. Should I inform my neurologist, or just wait and see? Any advice greatly appreciated!

[/quote] Hi Hunny, im not the best for advice on why this happens hence the post, i would say to let someone know whether its gp or neuro, do you have an ms nurse? They may offer you steroid treatment ? Better to let someone medical know xx

Thanks Sparkly, sorry to barge in on your post!  I have e-mailed neuro's ec, and am off to docs on Thursday.  Hope you get some relief soon x

Thats okay, hope you feel better soon aswell xx

Can't mow the lawn now, mower has no cable!happy