What does this picture indicate?

[biowham]

Female, 40. Hx = autoimmune thyroid, thyroidectomy in April ’07. EBV, Aug ’05, sick 2.5 months. Paternal g-mother w/PPMS.

Onset, Oct 07, paresthesias/numbness, rt foot (has cont'd since, increasing in intensity; waken stiff and unable to use properly every morning. Slow but definite progression up calf). Vertigo, several episodes.

Jan 08: +Romb; hyperreflexia+clonus, rt leg; slightly hyper rt upper; NCT normal all limbs except for ½ CMAP on right vs. left hands; EMG normal all limbs. MRI, brain=several T2 hyperintensities, <3mm, more punctate, most in lt hemisphere. Spine: "mild" t-spine herniations (t6, t8) w/ arachnoid cyst also t6.

Referred for CT myelogram, LP: Both normal.

Neurosurgeons: No need for surgery. +Hoffman’s both hands, so not relevant (?)

Apr 08: F/u MRI, brain/spine—more punctate T2 spots visible, but different radiologist who called it “normal.” Tspine had “Nonspecific myelopathy” @ ~T4.

Ju ’08 on: Lhermittes, 1st noted after hot tub. Predictably triggered by heat and/or exercise. Extreme heat intolerance. Weakness, can't stand around for long. These symptoms persist. On exercise, I walk OK initially but gait degenerates considerably.

Ongoing: Since Jul ’08, fatigue, deepened by heat; trouble with stairs, especially controlling descent. Cont'd leg weakness. Cont'd Lhermittes (back lt thigh, rt heel, occasionally lt inner arm). Frequent night wakening with entire lt arm and hand numb; often rt hand, ulnar dist.

Dec 08: Spine (C,T) MRI—unremarkable. Arachnoid cyst “smaller.” Neurosurgeon released me from his care.

Dec/Jan: 2 back-to-back UTIs, persistent pyuria.

QOL: Too fatigued, especially on hot days, for my 3 young children. Pain and paresthesias distracting—before Oct 07, was effortlessly energetic and physically active. Short-term memory is FRIED; long-term OK. I’m a biology professor and teach, and have my students email me anything we discuss because I otherwise simply will have no memory of it.

Neuro confused. What do you think?

[Nancy T]

How exactly did they explain the Lhermitte's?

(Hard to believe they threw "conversion disorder" at you when you have actual signs of something abnormal. Aah, maybe not so hard... I had severe hearing loss--which can be measured objectively--and highly abnormal auditory evoked potentials, as well as very distinct things like Lhermitte's, but still got the "medical student's disease" label. Apparently, to qualify for that label, it doesn't matter whether you read about the symptoms BEFORE or AFTER you got them. Why don't they TRUST us?)

[biowham]

Lu--not only have I not fired him, I'm seeing him in a few weeks. I had a "discussion" with him about that suggestion, and he withdrew it. In his case, his reason was "I want it to be this way so that it will fit my hypothesis that the tspine herniations are to blame and ergo I must dismiss anything above that level as 'CD.'" Of course, if that were truly a concern, he should have referred me for a psychiatric evaluation, which he did not do. And, as I said, after we had a "discussion," he retracted that. I have to give him props, though, because he noted a plural effusion on my MRI that the radiologists had not noted at all. Turned out to likely have been just a viral thing, but still...I guess everyone has their talents. He's also the only one who ran all of the appropriate "ruling out" bloodwork--all of which was normal. Honestly, I think he's a good doctor, but he's older and has a lot of older patients whose brains probably scream "MS," and he unquestionably has a pretty paternalistic attitude about young women. We're all hysterical, you know.

I haven't seen him in almost a year because I'm just so disgusted in general, but this is a f/u for a recent spinal MRI for which the neurosurgeon dismissed me, and this Neuro is the one who referred me to that neurosurgeon, so...continuity of care and all that. I don't know. If he's still offhand and dismissive, even with the Lhermittes and heat, I'll just walk...or lurch...away and live on it for awhile.

Bio

[Lulu54]

Hi Bio,
Don't start questioning yourself now as to why you are still questioning. Like everyone, you want a definitive answer.

That is one amazing litany of tests and symptoms.  It is so easy to understand the frustration of so many people out here without a firm diagnosis when an obviously well schooled person like yourself with these types of symptoms and diagnostic evidence can't get a neuro to commit to a diagnosis.  

I trust you fired the doctor that wanted to label you with conversion disorder?  We've seen that label a number of times on the forum and I often feel it's neurospeak for "I don't know, but I have to label it something."

Good luck and keep us posted. Even if it is PPMS you deserve competent, compassionate care for your symptoms.
Lulu

[biowham]

You are correct in your summary, in my opinion. I've waffled around b/c of the herniations and their relevance, but the Lhermittes places it, in my mind, squarely above t6, and the heat sensitivity just seals it.

The t-spine herniations threw him/them off (one neuro--I've had two) wanted to attribute the lower extremity sx to the tspine and any upper extremity to "conversion disorder" b/c he really wanted it to be the herniations, so nothing above t6 "counted"), the MRI T2 hyperintensities simply aren't impressive enough, and the LP was negative. I was wondering if perhaps an SSEP might help clarify. No one has even mentioned the tspine "nonspecific myelopathy" as remotely meaningful, which has struck me as odd. I've had another neuro who wanted to call it RLS--and it simply isn't that at all. That and the suggestion of CD have been the most irritating aspects of the diagnostic end of this.

Also, I don't have "relapses" and "remissions." This is just one continuing, gradually increasing process, and I think that also confuses them.

The one thing that keeps me from agitating and "neuro shopping," etc., is that if it *is* MS, it's likely PPMS, and from my understanding, there's not much that can be done preemptively for that to prevent progression.

I'm not even sure why I posted the question. Seeking a rational response? Don't know. I appreciate your taking the time to answer. When and if I again see a neuro, I'm going to request a 3T MRI (all previous have been 1.5) so that the spine imaging can have greater clarity.

Completely off topic, I've been reading your other responses and have a deep appreciation for your directness.

Bio

[Dr. Daniel Kantor, MD]

Where is the confusion?

Your description uses language pointing to MS. If I understand correctly there is a neurologic history, abnormal neurologic exam and abnormal MRI (specifically spinal cord).

Why is this a diagnostic dilemma?