Lhermitte from MS or mild stenosis? Or anxiety?

[nokia1]

I'm sorry that I posted to another topic but I haven't seen the rules.
So here is my disaster:
In general I have buzzing all my body but I found that..
When I bend down my head I get more buzzing(not electrical shock) in my hands or above the knee or my toes its changing. I fell nothing on my spin no electrical shock nothing.  
I'm wondering could that buzzind be the begining of a Lhermitte sign or its anxiety again? I'm very scared all the time that I have MS and Its not visible on the MRI's ;(
Here is my history of the symptoms:
In March 2006 after 1-2 moths of stress I started seeing floaters, being off balance, tingling buzzing numbness in hands and foot, thiches all over, my right thigh started cramping(but only when I'm walking). I had blurred vision, weak forearms (If I lift something they strated to hurt and cramp) Also my muscles were jerking I can see them, my tongue started to sore I lost my taste for 2-3 weeks my calfs cramped etc. Then I started to feel my left leg and arm very weak I did EMG which was ok.
After 12-13 months suffering and googling I went to neuro, all physical exams were ok, no Babinski, I have abdominal reflexes I did MRI of my head - it was ok,, then 19 months ago I did c-spine and upper throatic - again normal.  

Is it possible to have L'hermittes due to MS and  normal reflexes, no Babinski?
I mean if I have c-spin lesion (not seen on MRI , 19 moths ofter the onset of my symptoms ) it  will be L'hermittes, but I have normal reflexes and I do not have Babinski as neuro said?
So my buzzing(not radiating only buzing changes in the body) when I flex my neck is not L'hermittes ? True ot faulse?

[blackywilson]

A related discussion, lhermittes signs was started.

[nokia1]

Today I made another C-spine MRI, which showed no MS,  but herniated discs at C7-Th1. I will go to my neuro next week.

[Nancy T]

With a normal MRI and a normal physical exam, you surely aren't going to get a diagnosis of MS.

Which I don't think means that it's 100 percent impossible that you have MS, only that there are no objective findings and thus nothing can be diagnosed. This is as it should be. You don't want a diagnosis of MS if the doctors aren't pretty darn sure about it.

Symptoms can be due to many causes.

Yes, I have Lhermitte's when I'm standing. I have no idea why your doctor would say it occurs only when sitting or lying--I wonder if you misunderstood her.

Please realize that I am NOT an expert on MS and I do not have any kind of medical training. I have just done some reading on dizziness and neurological problems because I've had these symptoms for a long time with no plausible explanation for them. So, please talk with your neurologist to clarify things that you don't understand.

Very best of luck to you! Sorry you are in pain.

Nancy

[nokia1]

My neurologist says that its not possible to have MS with normal MRI and normal physical exam but who knows.  
She told me that if there is a damage on the spinal cord there should be abnormal leg reflexes.Also that Lhermitte's occure when you are sitting or lie on  the bed.

I'm interested have you had Lhermitte's when you're standing?

[Nancy T]

I don't know why you have the shoulder and arm pain and weakness, but as for Lhermitte's, it certainly can occur when you're standing or sitting. I have never read anything that says Lhermitte's must occur in a certain position (sitting or standing or lying). The key to its being Lhermitte's is that it occurs when you bend your head down, regardless of your body position.

My leg and other reflexes have always been normal, as far as I know, even though I have Lhermitte's. You CAN have Lhermitte's but normal reflexes. I suppose it depends on where exactly the spinal cord damage is.

How does your neurologist explain the Lhermitte's?

[nokia1]

I would like to share more info. I have pain in the left shoulder and left arm weakness time to time. Isn't this pointing to my "mild" stenosis?
For example when I'm traveling with car and If I try to sleep and my neck is lean back to the seat. When I wake up I have strong pain in the shoulder and down the arm? Why is that I'm not moving I'm sleeping? But my neck is flexed opposite side not down to my chest as always...

[nokia1]

I think that in the definition of Lhermittes is written when sitting on chair and lying in bed.
Also if you have Lhermittes you should have abnormal leg reflexes because there should be a damage on the spinal cord. Is it correct?  
I would like someone with Lhermittes  and MS to explain is it happening when you are standing?

[Nancy T]

I have it when I bend my head down, regardless of whether I'm sitting or standing. I suppose if I bent my head forward while lying in bed, I would have it too.

[nokia1]

Do you have lhermittes when you lye down or only when you sit in the chair. I have when I'm standing or sit down in a chair. If I'm liying on my bed no vibr/buzz.

[Nancy T]

To doublevision--thanks for the info. I would like to add one more thing about Lhermitte's. I believe that the same (or similar) phenomenon can occur with certain actions other than bending your head down.

Months before my first real Lhermitte's (which was an electic "buzz" in a "southern" region too embarrassing to mention), I noticed an odd sensation in my tailbone area whenever I would bend forward slightly from the waist or else reach my right arm out and across, such as when reaching across a bed to pull up the sheet. It was a vague, momentary "numb" sensation.

A few years ago (in my 8-year history of Lhermitte's!) I had a time when simply taking a deep breath would cause the "buzz" below my left knee, during a period when bending my head caused the exact same buzz in the exact same place.

Several times I've experienced periods of Lhermitte's-buzzing in a finger or hand when turning my head left or right, not bending it.

Someone on an MS forum described getting Lhermitte's sensations when riding over bumps on their bicycle or something similar.

So I think (my layperson's guess!) that all these things have a similar mechanism ("bothering" the damaged spinal cord in some way, as Lhermitte's occurs when it's stretched from head-bending) even if they wouldn't strictly be called Lhermitte's.

Nancy T.

[Nancy T]

Hi Nokia--no, I don't have stenosis (as far as I know).

I think the best thing to do is to ask your neurologist what he thinks your next steps should be. I would not focus on getting specific tests, but leave this up to the neurologist's judgment.

If you feel that your neurologist is not helping you sufficiently or not listening to you thoroughly, get a second opinion from another neurologist. That may help you find the answers you're seeking or at least feel more comfortable about your situation.

I really do understand that feeling of "needing to know" whether you have MS or not, because everything you read (at least in the early 2000s when I started having these symptoms)--even when you walk into the sandwich shop and see an "MS Bike Tour" brochure--everything says 'EARLY DIAGNOSIS AND TREATMENT ARE ESSENTIAL!" So it's hard to understand why a neurologist would not want to follow up, do more tests, and pursue things until they're able to tell you definitely "yes, you have MS" or "no, you don't have MS."

However, one problem with MS is that it's a diagnosis of exclusion and it's a clinical diagnosis. This means that it relies on the neurologist's judgment and interpretation of history, exam, and test results. Different neurologists can come to different conclusions, and something like 10-15 percent of MS cases are misdiagnosed. And people who are diagnosed with something else sometimes turn out years later to have MS. Thus, it's often hard or impossible for a doctor to definitively rule out MS even when they're pretty sure you don't have it. Most people with various odd neuro symptoms do NOT have MS, and they may never get a firm diagnosis of anything.

Moreover, I believe that thinking led by the Mayo Clinic has changed, and many neurologist don't treat mild MS with the disease-modifying drugs, which are expensive and can have serious side effects. In fact the neurologist who said "MS" to me said that whatever was going on with me was so low-level that he wouldn't treat it anyway.

Thus, the urgency to find out whether it's MS or not is something we patients feel but often have to "get over"! Concentrate on finding out the answer to the symptoms that bother you most and do not stress too much about having MS.

MS symptoms would likely be WORSE after a hot shower, not better. But in any case I'm not sure that "worse with heat" applies only to MS symptoms--I think it's for nerve damage from any cause. (I may be wrong.)

Best of luck and please get a second opinion if you are not satisfied with the help you've gotten from your first neuro. And please don't second-guess the neurologist by demanding certain tests--the doctor is trained to know what tests may be useful. You can have all kinds of tests, but if the results will not make a difference in the doctor's thinking, there's no point in getting them. Have confidence in your neurologist or else find another one that you DO have confidence in.

Best of luck!

Nancy T.

[nokia1]

OK, what should I do next, LP, EP again MRI  ...or....? I have to find is it MS or not? in order to take some decisions for my future life?

[doublevision1]

Further to Nancy T's comments, I also respectfully disagree with Dr.Chahine's comment that:

"...symptoms of buzzing ....does not sound like Lhermite's sign...Lhermitte's sign is a shooting pain down the spine with neck flexion..."

My first sign of my MS was Lhermitte's in June of 2006.  My GP's immediate response was to tell me "that is a classic sign of MS."  I had no other neurological symptoms for over a year.    LS came and went.   15 months after onset of LS, I was dx'ed with MS following a polysymptomatic neurological attack, and based on positive brain and c-spine results, and elevated LP.  Among my various MS symmptoms, my LS comes and goes, sometimes presenting as an electrical shock or pins and needles, but most often as a BUZZING or vibrating sensation in various parts of my body (down my neck, spine, to my upper thighs and feet at various times), upon forward flexion of my neck.


Nokia, both Dr. Chahine and Nancy are quite right in saying that LS can be caused by conditions other than MS.  I am sharing my experience as well as the following published information to clarify the point that LS DOES in fact present as a buzzing sensation in some MS patients.

I also wish to highlight the fact that my initial MRI's were clear, yet repeated 14 months later showed prominent lesions on my brainstem as well as various locations on my c-spine.  If your symptoms continue, I should think that repeat MRI's could be quite valuable and should be conducted after some reasonable period of time.  



I also refer you to a recently proposed definition of LS put forward by Adnan H Al-Araji and Joel Oger, of University of Baghdad, Iraq and UBC Vancouver Canada respectively, in an article entitled:

"Reappraisal of Lhermitte’s sign in multiple sclerosis"

The authors state:
"...we suggest the following as an extended definition of LS:

a transient, short-lasting sensation felt at the back of the neck, lower back or other parts of the body following neck movement, commonly flexion. The sensation is usually electric-like but can be tingling, buzzing or otherwise. It propagates rapidly and disappears on resuming normal posture."


Further, here is the Abstract for the aforementioned arrticle:

"Lhermitte’s sign (LS) is strongly linked to multiple sclerosis (MS). Our aim is to reassess its frequency, natural history, various characteristics and neuroradiological correlation in a cohort of MS patients attending our specialized MS clinic and to propose a working definition. Consecutive patients with CDMS and normal controls were interviewed using a structured questionnaire. Cervical MRIs were reviewed when available. There were 300 MS patients and 100 normal controls. Forty-one per cent of the patients and none of the controls reported having LS during the course of their illness. In 53% of those who reported LS, it started in the first three years of the
illness and began as an isolated symptom in 64% and was polysymptomatic in 36%. In all patients LS was a short-lasting sensation in all patient who experienced it and was mostly stereotyped in individual patients. Characteristics varied widely between patients. Forty-three patients had cervical MRIs; 17 out of 18 patients who reported LS had abnormalities, whereas only 13 out of the 25 with no LS had abnormalities. The results indicate that LS is highly prevalent in MS, is commonly stereotyped in individual patients, has a variable natural course and correlates significantly with cervical MRI abnormalities. A working definition is proposed.
Multiple Sclerosis (2005) 11, 398/402


I trust you find this information to be helpful in clarifying the characteristics of Lhermitte's, and an understanding of how varied it can present from one patient to another.

[nokia1]

Also I have buzzing in both hands and right calf when I flex my neck  at the same time I understood today. This symptoms are improving after a hot shower. They almost disappears for some time.

[nokia1]

Hello Nancy,  do you have cervical stenosis?  I have mild on C4-5 level.
I think that it cause everything because I have pain in the left shoulder, weak left arm and leg, being off balance , I coudn't press my key board with my index finger(left).  Also If I lay down on my bed and flex my neck I get constant tingling in my hand, but if  I keep my neck standing no tingling.
When I flex my neck I feel extreme poping.  

[Nancy T]

With all due respect to Dr. Chahine, I must disagree about your buzzing in hands, knees and toes when you flex your neck: that IS Lhermitte's.

I'm not a medical professional, but I have read on a couple of MS forums where people describe Lhermitte's in many ways other than just the classic "shock down the spine."

It does NOT have to be going down your spine to be Lhermitte's. The key thing is that it happens when you bend your neck down.

I have not been diagnosed with anything, but I have had Lhermitte's similar to how you describe it for the last 8 years. When I bend my head down, I get electric buzzing, "pulling," or vibrating sensations in different spots in my hands and lower body--NOT down the spine. These "spots" or areas of Lhermitte's (such as the front of one thigh, below one knee, in one finger, on the bottom of one foot) will last for days, weeks, or months at a time (every time I bend my head down far enough), then go away and reappear elsewhere or in the same place later on. Sometimes they only occur for a day or two at a time.

I know this is Lhermitte's because when I first described this symptom to a neurologist (when I had no idea what it was), he said flatly, "That's MS." He had been talking about MS the whole appointment even though he knew I'd already had a normal brain MRI and normal exam. (Turns out later that the MRI wasn't totally normal, it had nonspecific small spots, but since at the time they were looking for an inner-ear tumor only, they didn't report the "spots.")

After four years, two neurologists, and four MRIs (all nonspecifically spotty though changing, per the radiologist at least), I never got a diagnosis. (Never got a spinal tap, though.) I stopped seeing neurologists five years ago, or rather they stopped asking me to come back. Like you, my neck MRI was normal (two years after the Lhermitte's started). Another neck MRI four years after that showed bone spurs, but the spine specialist said this was not the cause of my Lhermitte's. Thus, 8 years of Lhermitte's with no answer as to the cause. My B12 was normal.

I am NOT saying you have MS--certainly anxiety can cause a lot of strange symptoms--but what you are describing with your Lhermitte's experience is very much like mine, and what that neurologist said to me indicates that Lhermitte's does NOT have to go down your spine. This is confirmed by many people on the MS forums whose Lhermitte's only occurs in a foot, hand, or lower body part.

Please don't worry too much about MS. For one thing, other things besides MS can cause Lhermitte's. (Although what's causing mine, I surely don't know.) For another thing, MANY people have odd neuro symptoms and never get diagnosed. You just have to accept it. Get treatment for your worst symptoms and don't keep banging your head against a brick wall trying to get a diagnosis. It ain't worth it and it probably won't happen! (I gave up expecting a diagnosis or talking to doctors many years ago.)

I also have longtime dizziness, electric shocks and paresthesias in both sides of my face, a whole summer of a certain kind of arm incoordination, a whole fall of slightly "misstepping," and also paresthesias in my legs and elsewhere, a significant slowdown in walking, and a number of other odd symptoms, not to mention highly abnormal auditory evoked potentials bilaterally and sudden hearing loss on one side. For all that, I was effectively "diagnosed" as a hypochondriac, because I had "too many" symptoms and too many questions. Once you get the anxiety/hypochondriac diagnosis, you can forget about being taken seriously again.

Best wishes and I hope you get relief from your symptoms. Preserve your mental health at all costs, by giving up on the diagnosis search and just living your life the best you can.

Nancy T.

[Neuro Forum]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.

True. The symptoms of buzzing you experience does not sound like Lhermite's sign, as you correctly state, Lhermitte's sign is a shooting pain down the spine with neck flexion. In addition, while Lhermitte's sign is classically seen in MS patients, it can be seen in several other conditions: arthritis of the spine, radiculopathy ("pinched nerve"), and others.

To make the diagnosis of MS there are specific criteria, in which objective neurologic findings are present affecting 2 or more locations in the nervous system in 2 or more episodes. In order to make this diagnosis, a detailed history and neurologic examination is required. MRI is very helpful and needed as it helps determining the presence of white matter lesions in 2 or more locations, but MRI should be reviewed properly and correlated to the symptoms.

It seems that you have had an MRI of the brain and C-spine, and if this has been negative, I would say the diagnosis of MS is highly unlikely in the context of your clinical symptoms. It is difficult to say what your symptoms are from, they may be anxiety/stressed related, however other causes such as thyroid abnormalities, vitamin deficiencies, diabetes, could also cause cramping and could be ruled out with some blood tests. I recommend continued follow-up with your physician.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck