Lhermitte's and non-Lhermitte's paresthesia

[Nancy T]

Does anyone else get Lhermitte's attacks in which you ALSO get the same paresthesia (or shock, or whatever) in the same place, at times when you're NOT bending your neck?

For example: two nights ago I got a new "attack" of Lhermitte's--a light shocky feeling on the outside of my left ankle when bending my head down. It continued yesterday and today.

Now, this evening, I am getting "pulses" of the same shocky feeling both with head-bending AND randomly, without head-bending.

I've had this same thing with, e.g., vibration in my left thigh and another time on the bottom of my right foot. Bending my head would cause the vibration--but the vibration would also occur independently, often in "pulses."

In the past, I got the "independent" thigh-vibration first, and it progressed to Lhermitte's thigh-vibration after maybe a couple of days. This time, with the ankle, it's the opposite--first it was Lhermitte's only, now it's unprovoked paresthesia PLUS Lhermitte's.

Does anyone else get this--i.e., a paresthesia that manifests by itself but also with head-bending?

Nancy (undiagnosed)

[Quixotic1]

I do.  And mine is identical to yours.  I get a vibrational feeling in the front of my left thigh that can occur with or without neckbending.  Mechanically it makes perfect sense that this could happen.  If the lesion is such that the signal is interrupted on its own it will cause the paresthesia unprovoked.  But, if it is also in the right place such that neck flexion can irritate the same lesion, then the L'Hermitte's can occur, too.

Q

[Tammy826]

I'm not DX'd yet either but yes I get that alot also & it doesn't go away. I feel the vibration several times a day. I used to have to bend my neck to my chest to get the L'Hermittes  but now it does it with my neck only slightly bent (mainly when I bow my head to pray). Yet another crazy symtom I find that I'm not alone in!! Quix, what you mentioned makes perfect sense & I hadn't thought of it , so thanks!

[biowham]

I have this all the time, exactly as you describe it. In fact, sometimes, the buzz on its own tips me off to a Lhermitte's fire-up.

Bio

[doublevision1]

I also have similar sensory issues.  I often have Lhermitte's, most noticeable with forward neck flexion during and immediately following exercise.  I get the buzzing down my back and in the fronts' of my thighs.  Used to also get it to my feet but that hasn't happened in a while.   However like you I also get these buzzing sensations esp on the same area on my thigh, without any movement at all.  Weird.

[Nancy T]

Very interesting to hear that others have this in the same way. Thanks, everyone.

Quix, your explanation does make sense; in fact that's what I assumed was going on--a bit of damage that shows up even more when the spinal cord is stretched.

Tammy: I have noticed over the nine years that I've had Lhermitte's, during some flare-ups I only have to bend my head slightly to make it happen; in other places/times, I have to bend my head way down to make it occur.

I distinctly remember one time having a Lhermitte's buzz somewhere, I think under one knee. When I'd lower my head a little, it would buzz and quickly start to fade out. I'd lower my head a bit more, and the buzz would be reinvigorated for another few seconds. Lower my head a little more and it'd buzz strongly again.

Another time, when I had the Lhermitte's vibration in the bottom of my foot, I'd lower my head partway and there would be a pulsating vibration. When I lowered my head all the way, the vibration would be constant.

All this makes sense in terms of the mechanism of Lhermitte's... but it's just so darn WEIRD.

It's funny what you forget, too. My very first journal entry about the "funny feeling" in an embarrassing "southern" region when I bent my head down (I had no idea it was Lhermitte's until the neuro told me it was "MS") says that it happened when I was in the shower or had just got out. I had completely forgotten about that. (There is a LOT in my ten years of "record-keeping" that I'm surprised to go back and find.)

Nancy

[Nancy T]

Hi doublevision. Even during times when I'm otherwise not having Lhermitte's, I will almost invariably have it within 20 minutes of starting my neighborhood walk (uh, when I COULD do my neighborhood walk--not sure anymore, but I used to be a great walker).

Walking along... duck to avoid a tree branch, and buzz! in my knee. Particularly when I'd get home and stop walking--maybe the heat would then build up worse, because I would get "rivers" of buzzing down my rear and thighs and often also in other places.

[doublevision1]

Me too.  It happens to me just about every evening when I take my dogs out for a walk.  It was actually the spinal buzzing I started to notice immediately after walking to my office from my car that was my first noticeable MS symptom.  This started around June 2006.  This was a year or so before I was dx'ed.  The Lhermitte's would come and go for weeks or months at a time, it wasn't severe or painful, and I didn't have any other symptoms or feel in the least bit ill till a major attack in Sept 2007, shortly after which I was dx'ed.  

Interestingly, back in 2006, when I mentioned to my GP in passing about the buzzing, I was curious but not at all concerned that it might mean something ominous.  I thought it was related to poor posture and was an issue that could be fixed by an ergonomic work station.  However, he immediately got very serious and told me it can be an early and typical symptom of MS; that is the only time he's ever seen it, in patients with MS.  Wow, didn't expect to hear that!  I was in the early stages of the disease at that time, but there was no other evidence to actually call it MS yet.  Some people whom I've told this story to thought that my GP was way out of line and that he was inappropriate to spring that on me, prior to any MRI studies or other concrete evidence.  I have actually always been grateful for how he handled it.  It gave me over a year to do some research and get used to the idea of even the possibility of having MS, while I was feeling well.  So the following year when I had an onslaught of other neurological symptoms, I knew immediately, weeks before my dx, what I was facing, so later on I was not blindsided by the words 'you have MS.'  I think I was very lucky to have a GP who was so on the ball, better than many neurologists from what I gather here based on so many negative experiences of many of the members.

Sorry didn't mean to hijack your post!  The talk of Lhermitte's always gets me thinking of those early days.  Who would think a sensation so innocuous (for me anyway) would be a precursor to such a dx?

[Nancy T]

Hi doublevision. I agree, your GP was very good to have recognized and paid attention to the Lhermitte's. He would have been out of line to have NOT taken it seriously and included you in his thinking.

Did you see a neurologist and get an MRI at that time, or was that not until your big attack a year later?

I'm not sure that I originally mentioned the "funny feeling" to my FP doctor, since it was only one among many other odd symptoms. I was more concerned with the facial shocks, itching, and paresthesias. The second neuro, though, said "That's MS" when I told him about the weird thing that I later realized was Lhermitte's.


I never had any big attack, though, so was never diagnosed.

I actually think I had Lhermitte's even earlier--during my own first "onslaught" of neuro symptoms (nothing objective, though--just a ton of paresthesias and dizziness that came on over several weeks in fall 1999). But I didn't mention it to the first neuro, because it was such a vague little thing and much less prominent than my dizziness, shocks, and itching. In fact it wasn't head-bending that prompted it--what happened was that I'd get an odd momentary "numb" feeling in my tailbone area when bending slightly forward at the waist.

So, Lhermitte's was among my early symptoms, at least in the "modern" era (I had an "ancient history" of dizziness and numbness in my hip 15 years earlier which I never considered to be anything "wrong" at the time).

You are right... innocuous symptoms can be precursor to a diagnosis, or at least (in my case) the knowledge that something is wrong.

Nancy

[sandie490]

Hi Guys
Just going through some of the older posts, and saw yours.  Okay I haven't been dxd yet, but I was diagnosed with the Lhermettes by my neuro,
Couple of questions,  Whats the clinical and symptom difference between Lhermittes and paresthesias?
I get the buzzing feeling different times, all over my body, and I also get electric like shocks when I move my head certain ways.  But I also get these weird pulsing muted or mild electrical current like feeling that washes over me. It sometimes washes over the back of neck down an arm, or over both shoulders.  Sometimes it actually almost feels like RLS  feeling only not just in the legs.  It is so uncomfortable, and ickky, and like you guys said, it's not only when I flex my head.  But I do get it alot when I get up from a chair, or just walking up or down stairs etc.  Very Very interesting!  And the Plot Thickens!  he he he  

[Nancy T]

Hi Sandie. I guess technically, it's Lhermitte's if it occurs when you bend your head, otherwise not.

However, I've heard of people having these kinds of sensations (buzzing, tingling, shocks, etc.) during other kinds of activity--such as riding over bumps on a bicycle.

So why not when climbing stairs or getting up from a chair? I'm guessing that anything that makes your neck move slightly, even if it's not actual bending, might cause these sensations.

I would GUESS that the mechanism is similar--somehow the spinal cord is disturbed mechanically, and that makes the damaged nerves fire up and cause weird sensations anywhere below the neck. With head-bending Lhermitte's, the nerves are stretched and thus more likely to produce bad signals.

I know that sometimes when I've had Lhermitte's, I only had to bend my head VERY slightly for it to occur.

And once, during a period of Lhermitte's when the buzz was just below my left knee, I ALSO was getting that same buzz, in the same place, when I took a deep breath. That only lasted during a car ride home.

Other times I'd get Lhermitte's in a finger when I turned my head a certain way (without bending my head down).

I would venture to GUESS that when you get a paresthesia that repeatedly and consistently occurs when you perform a certain movement such as moving your head, walking up or down stairs, etc. that it is the same kind of phenomenon as Lhermitte's.

Interestingly, I just saw a neuro last week (see my post titled "Is this a record or what!") and he said that what I was describing--shocks, buzzing, pulling, or vibrating somewhere in my legs when I bent my head down--was not Lhermitte's. I argued with him about that, because it IS Lhermitte's, or at least it's the same phenomenon, even if you reserve the term "Lhermitte's" strictly for a sensation starting at the neck and running down the spine, which is the definition you most often see on Web sites. I imagine that this doctor learned that definition in med school and never let anything change his mind. (I asked him if he'd ever had any other patients who had this similar to me and he said no, he'd never heard of it--which was surprising coming from an MS specialist, especially because years ago another neuro, NOT an MS specialist but a very smart guy, said "That's MS" when I told him about this symptom.)

The neuro I saw last week said it WASN'T MS--but he also believes that the official diagnostic criteria for MS require lesions on MRI, which I don't think is true, so I don't have a lot of confidence in him.

Sorry to rattle on so, but I'm guessing that yes, what you are describing is essentially the same thing as Lhermitte's.

Nancy