Should a doctor pay attention to this?

[biowham]

I'm pretty sure I know the answer...but then again, neuro 3 completely ignored it. The Lhermitte's stuff that fired up this summer had been intermittent, often showing up when I got hot or stressed or both. Now, it's here permanently, apparently.

Anyway, I brought this up with that neuro at an August appt, and he completely did not address it. At all, except to say "Except for the Lhermitte's, I think you might have RLS." Which I most emphatically do not have. Just don't.

Should he have paid attention to that? My last MRI--April 2008--of the c-spine showed only a "small-medium left herniation at c6-7 "without extension or fragmentation," no cord deformity, "spinal canal and neural foramina appear adequate in size." Also have had a CT myelogram that was normal--no entrapments.

I'm thinking that this Lhermitte's is likely because of some kind of myelopathy in my c-spine and wondering that also could be the explanation for my tingling/numb pinkies. The Lhermitte's buzzes are on the heel of my right foot and just above the ankle of my left leg. They're there any time I start to bend my neck downward.

I quit doctors, and still have. I'm supposed to have a follow-up MRI in November through one of my neurosurgeons. I may go ahead and do that, but ONLY if I can get a referral to a 3T and be sure to get brain plus C and T spine.

Bio

[doublevision1]

My first symptom was Lhermitte's.  My GP immediately thought MS.  I promptly had a brain and c-spine MRI done on 1.5T, which was normal.  GP indicated it might just be too early to see.  Gave me B12 shots in the meantime on the off-chance that this was the culprit.  It wasn't.  Neither one of us really thought it would be, although I suppose I did hope.

Had the Lhermitte's intermittently for several months.  In the meantime, I changed GP's when my guy moved away.  New GP referred me to a neuro as she agreed something was must be wrong.  Met with first neuro in June 2007.  She did neuro exam and nerve conduction studies, both normal.  By then I actually hadn't had this symptom for a while, and felt very healthy.  Neuro said she saw no evidence of neurologic disease, but to come back to see her if it returns.  

3 months later in September, started with other neurological symptoms which came on quickly and severely over a matter of several days:  MS hug, fatigue, double vision, lots of numbness and tingling in face, neck, trunk, fingers, calves, and again Lhermitte's.

All bloodwork normal.  Promptly get another MRI, again on a 1.5T.  Two lesions found, one on brainstem, one on c-spine.  Referred to on-call neuro, he rules out MG (suspected b/c of double vision).  Immediately go for LP, at high end of normal, no O banding.  See two on-call neuros and two neuro residents at the hospital that weekend, all agree MS.  Start 5 day course of Solu-medrol and was referred to MS clinic. It was 10 weeks from the first pinkie tingle in Sept to meeting my MS specialist.  I was lucky that it all happened so fast.  No limboland for me.

And it all started with Lhermitte's.  My situation is a clear example that one can have a subjective symptom of MS which does not initially show up on any objective testing.  It was only a matter of time.  

I want to reiterate that my MRI's have always been on 1.5T, so while I understand that 3T is superior, and wish I had access to one, I hope you don't rule out 1.5 if that is all that is available to you.

db

[Fluffysmom]

My first two, possibly all three, neuros attended your blasted seminar.

I got a " with fatigue of eye movement may have subclinical INO with rapid saccades", then when #2 got my negative LP, noted "patient has distractable Romberg today".  She rushed the test, stopping me with her hand when I started swaying while tapping my thumb and forefinger together, and she mentioned "possible somatization".  My new neuro didn't do a Romberg, but did the Babinski so hard my right foot hurt for almost two days.  

Sorry, I didn't mean to rant.

I'm impressed by the "weakness when asked to hop, squat, and rise on right side"; I never had tests like that, since this wonderful elderly doctor I used to see at the Pain Clinic.  He had a background in orthopedics, but he understood how the body worked, and checked me out thoroughly at each visit.  I wonder if I could get his chart notes; he retired a few years back.  He always spent 1.5 to 2 hours with me, so his notes would be copious.

I have physical issues that confuse my neurological symptoms, and I fear it will take and extraordinary neuro to sort it all out.  They do exist, right?  :o)

I hope you get your 3T MRI of brain, C, and T spine.  

Kathy

[biowham]

Thanks Quix, Zilla. Zilla--I'm just very confused about why you don't have a dx. Very very confused about that.

Quix., I do have a few things that aren't sensory. There's the +romberg's, and depending on whom you talk to, I have "3+ with clonus" on right leg reflexes. From neuro 2: "The patient's neurological exam is noted to be abnormal." I have "weakness when asked to hop, squat, and rise on the right side." "Quadriceps reflexes are abnormal." "Mildly weak in right upper extremity." Normal ROM of the c-spine (i.e., probably not mechanical problems there).

This is the neuro who did by far the most intensive exam...but he's also the one who decided I had half a conversion disorder (he did change his mind about that). I actually think that if I were to call his office and say I have Lhermitte's, he'd pay attention to that. But I'm just sittin' on it. This third guy with his "RLS" thing...and Zilla, I wish, but he gave me a four-page HANDOUT on RLS--has really burned me for awhile. But I think it's almost malpractice to just ignore a "sign" of c-spine myelopathy. Sigh.

It's true that I don't really fit "somatization disorder." The sx aren't vague--they're very defined and confined to specific areas--but they do cross dermatomes. Of course, if I have a tspine myelopathy (which I do) and potentially a c-spine myelopathy (which I may), involvement of several dermatomes isn't such a huge surprise.

Zilla, I'm sure you'll let us know how it goes today.

Quix, hope your bone density is OK.

Bio

[Momzilla]

Yeah, I never got the RLS connection.  He sounds so foolish saying that, I think.  Do you think he MEANT to say MS?  It's a leap, I know....

I get your not wanting to see docs for a while.  I'm there, too.  By the way, I have an appointment with my neuro at 4:45 today.  See how long that lasted?  But I will not have more testing.  Unless he schedules some.  (Wink.)  I really cannot put myself through it.  If I hadn't just started a new job and come down with a 'relapse' for lack of a better term, and feared missing work, I'd stay away from this doc like the plague.  Know how you feel.  

Hang tough.

Zil*

[Quixotic1]

Well, I feel that a complaint consistent with L'Hermittes should be considered as a sign of cervical myelopathy.  I think your neuro is definitely suffering from attendance at one of those seminars.

I don't remember all your symptoms, but when they are purely sensory, it is easy to dismiss them as insignificant.  They can't be verified (well...they can sometimes with an SSEP) so we can pretend they don't exist, or they aren't significant, or the patient is inventing them.  People who do have MS will have the most trouble getting diagnosed if they don't have a classic looking MRI and if their symptoms are all sensory.  

I would have to agree with your decision to quit the docs and only have the next MRI if it meets the parameters you mention.  I would add if they will add the "MS Protocol" to the orders, so that the slices are adequately thin and contiguous.

Sorry, I didn't get to you yesterday.  Was at a DEXA scan, meal with my parents then crashed for the rest of the day and night until about 5am this morning.

Somaticized sensory complaints are vague, poorly defined and usually move around.  They are usually evanescent and the person will have a large amount of anxiety.  The problem is that the symptoms are so darn disturbing that, of course we have anxiety.  Your symptoms do not have the characteristics of 1) anxiety or 2) RLS (WTF???!!!).

Final thought for you?  On, Pooh!

Quix

[biowham]

I'm starting to wonder if at neuro conventions they have seminars on "how to ignore important things your patient tells you if you feel it doesn't fit in with your preconceived notion about the patient or the patient's problem." In fact, I'm thinking of putting together just such a seminar. God knows, I've got enough experience with that now. Seven doctors with the prefix "Neuro" to their handles and zero agreement among them. It's like the blind men and the elephant, and sadly, I appear to be the elephant.

Bio

[wonko]

I think they should, and I think you know that they should!  I'm sorry to hear that your doctors seem to have such a lackadaisical attitude about your Lhermitte's.  Hopefully when you come off of your sabbatical from doctors, you can find a better one.

~W

[biowham]

Thanks, Moki. I guess the question buried in all that is, Isn't Lhermitte's something a doctor should investigate?

Thanks,
Bio

[mokibear]

I wish I had the answers for you but as you know I'm a limbo lander myself.

I do think though you should still have a follow up MRI done. It can't hurt and like you said if you could have it on a 3T all the better.

Hope someone else comes on that can help you more. Just wanted to let you know I'm thinking of you and understand your frustration.

Hugs
Moki

[biowham]

Tap tap tap. Is this thing on?