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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?
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669758_tn?1242334351
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?
29 Comments
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378497_tn?1232147185
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
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572651_tn?1333939396
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
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378497_tn?1232147185
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
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152264_tn?1280358257
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?)
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378497_tn?1232147185
Nancy, I honestly don't know. They shrugged off the tspine myelopathy and blew off the Lhermittes. Of course, I have to think that maybe they think I'm making up the Lhermittes. I'm not, but unless they're me, how could they be sure?

I have a lot of friends who are MDs, some of whom I trained in their residencies or fellowships (for the research aspects), and they aren't like these doctors we keep reading about on here. They're not dismissive of their patients. My closes friend is an internist, and she spends an enormous amount of time individually addressing each patient and carefully assessing things. And I don't know why it seems so endemic to this particular specialty. Some have hypothesized that neuros, being quite bright and used to having and knowing the answers, become uncomfortable when something is equivocal and throw the blame elsewhere, i.e., on the patient. I don't necessarily buy that. Bright people have a capacity for handling grey areas--or grey matter, for that matter--and can step outside the algorithm when necessary. And I have no explanation, really, for the rudeness that I've seen described repeatedly on the MS board, either. Of course, there are two sides to every story, but...all of these stories carry consistent, typical features.

In my cases, the neuros who said "CD" and "RLS" were clearly coming from a specific perspective. In the first case, he had a hypothesis and was doing the classic "distort the data" twist to make findings fit. In the latter case, he was a Parkinson's specialist and wanted to give me a dopa drug, off label, for RLS. That connection should be obvious--dopamine disorders would be the first thing he'd think of after years of treating Parkinsons. In both cases, the neuros had a distinctly older patient population, as evidenced by the waiting room patients and magazines, etc., and I'm young, at the beginning stages of something, and really look pretty darned healthy until I've walked a mile or taught all day.

It's frustrating to experience, but I also have to admit that I don't live their lives any more than they live--or seem to understand--mine.

Bio
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378497_tn?1232147185
Good grief. Did I really type "plural" up there? I'm completely losing it. PLEURAL effusion. PLEURAL.

Guess I should add, "Used to be able to type AND spell" to my list. I've got an English degree in addition to my bio PhD and am a writer and editor. You can imagine how grateful I am these days for spell check.

Bio
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572651_tn?1333939396
Bio- it doesn't matter how you spell it - what matters is we all understand what it is you are writing.  I tend to fly through giving answers and when I read the mistakes later I just have to shake my head.  I too work at a university and in an English department where I would be tarred and feathered for the plurality of mistakes I make. :-)


You make a good point about the neurologists and the difficulty the people here seem to have in finding one that is compassionate and willing to work for the hard diagnosis.  Its tough enough to be facing the possibility of MS, without doing it with a well-schooled neurologist who has no bedside manner to help with the emotional issues.

I believe we are seeing the proof that satisfied patients mostly get on with their lives and don't spend much time praising their good doctors.  We're probably more likely to tell friends about a good car mechanic than a competent doctor.

I have gone out of my way several times to let everyone know how pleased I am with the care I get from my team.  Over on the regular MS forum there are quite a few of us happy with our doctors, and that even includes a few people who are not yet dx'd.  Maybe that's a new HP we should start - a patient nominated hall of fame of neuros we would recommend............

be well, Lulu
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152264_tn?1280358257
Bio, same here about the Lhermitte's--I've had to suspect they don't know whether to believe me about that and other nonvisible symptoms. In fact, the first neuro I saw kept referring, with cheerful smiles and head-shaking, to my "amazing" and "almost unbelievable" story--I think, in retrospect, that maybe he was probing to see how I'd react to that little hint. He was probably referring to my "amazing" story of hearing loss that occurred when I sneezed, since that really is unusual; but after many more years of experience with doctors, I have to suspect that some of what he said to me--even his frequent references to MS at that first appointment--was perhaps just "testing" to see how I'd react.

I have also seen some doctors (though other doctors MUCH more than the neurologists) "twist" the data. They say "That is [or can be] due to X," but when you point out a logical reason that it COULDN'T be X (e.g., the symptom occurred long before X), they don't want to deal with that fact (or maybe they think you're misremembering, or just argumentative). There's also the famous "Everybody gets Y," when THEIR "Y" is very different in frequency, intensity, etc. than YOUR "Y" (but they don't want to hear about that). Maybe they know that X and Y aren't relevant to the outcome, but it leaves you feeling like the doctor isn't paying attention, doesn't care, and/or isn't using logic, and thus can't properly diagnose you.

But I must say that my experience with neurologists vs. internists has been in some ways opposite to yours. I've seen two neurologists (not counting the very first one, who merely referred me to an ear specialist), both unfailingly polite, personable, unhurried, helpful with symptoms, for the most part responsive to my questions, and I think very smart, as well as listening carefully. The first one, the dizziness/hearing specialist, actually took a lot of time with me. But he was a minimalist with testing (which was OK--I guess he ordered only tests that he believed would give useful information, and in my case that didn't, in the end, include a spinal tap), and he was the one who eventually laid "medical student's disease" on me. That soon plunged me (admittedly an excessively sensitive person) into a downward spiral of shock, confusion, and mental paralysis that led to depression and despair, a spiral that was mainly due to (or devastatingly reinforced by) several PCPs--internists--who would not discuss my symptoms or my diagnostic situation after reading the neuro reports. Because that, of course, is the treatment for hypochondriasis: don't discuss symptoms, no more testing. (I am not, BTW, a hypochondriac--never saw doctors or read medical stuff until losing my left-side hearing in 1999, never thought I had a serious disease--at least until the neuro said "That's MS" to my Lhermitte's--and I don't go to the doctor often.)

What made my head explode was the CONTRADICTION between knowing that SOMETHING was wrong, possibly a progressive, disabling disease that supposedly needs early treatment, yet no doctor would seriously discuss my diagnostic situation anymore, nor follow up over time.

I kept hoping to find ONE doctor who would, trying 3 different internists. I finally switched to a family practice doc, as the internists cared about nothing except my blood (pressure, sugar, cholesterol--commendable though that concern was) and just made dismissive comments, or none at all, about anything else. (A rheumatologist did the same thing.) I have a great relationship with the FP doc (in the two times I've seen him, last Jan. and Feb.)--because I did not even tell him about the neuro symptoms!

What stumped and dismayed me about the neurologists was that after a one-year followup, when they'd found apparently no clear physical abnormalities except the auditory stuff and nonspecific brain spots, both said I didn't need to come back. They didn't SAY "You don't have MS," but they implied it very forcefully (just like they'd never originally said the exact words "You have MS," though they implied it very forcefully). One said "But that turned out not to be the case" and eventually left it at "I don't know what's wrong with you." The second said, "I know you were worried about MS, but..." and left it at "an entity we call benign paresthesias." Yet they continued to say other things that seemed to leave the door wide open to MS and that seemed to assume that I DID have some disease or other--though we weren't going to (try to eventually) find out what. They seemed to imply, finally, that I could come back if something really disastrous happened, and that they were passing me back to my PCP. But what good does that do when the PCPs interpret the neurologists' reports as meaning the patient is a hypochondriac, or just anxious? Don't the neurologists realize that this leaves the patient cut off, adrift, in "the hell of communication denied," as Oliver Sacks put it? Worse yet, it makes the PCP suspicious of you over ANY symptom, neuro-related or not.

Since then (six years ago), nothing "disastrous" has happened; I've never woken up blind in one eye or unable to pee, but over the past 10 years--besides continuing Lhermitte's and other very distinct sensory symptoms and dizziness--my walking speed and stamina have declined rather frighteningly (must stand still and rest every couple of blocks). But that's meaningless, because I could still walk down their hallway and back with no problem. So, what do you do? Give up and count your blessings for still being able to work.

Your reference to an internist who "spends an enormous amount of time individually addressing each patient" astounds me. Where ARE those internists? The only doctor who spent an "enormous" amount of time with me, EVER, was that first neurologist--no doctor in my life had seen me eight times until then! (These were visits of 20-30 minutes each usually, the first one almost an hour.) I think he really did go through a big differential diagnosis in his head. But telling a patient first that she has MS and then that she's a hypochondriac for thinking she has a serious disease--well, NO, I do NOT understand how they expect a patient to reconcile that in their head. He did sit with me quite a while one day explaining how "medical student's disease" was "part of the differential diagnosis, so I have to bring it up," which greatly mollified me at the time. (It's true that I had a lot of symptoms, which I'd originally written out in detail for him.) But later it became clear that that WAS, for all practical purposes, now the diagnosis, since he was letting me go without further scheduled follow-up, and with notes back to my PCP talking of (and disposing of) various possible diseases but also of a patient who gave a history in "all too much detail" and whom he had asked "why she was taking these symptoms so seriously."

Bio and Lulu, as for horror at making typing, spelling, and other mistakes--tell me about it! I'm an academic copyeditor (plus part-time library clerk), and what I find when I go back and look at stuff I've written or edited, well, it sometimes makes me think I should quit my job because I'm just a big fake! Somehow, though, the authors love me. And most people on my copyeditors' list tell similar tales of horror at simple things they've missed, even after reading something three times, so I know it's not just me being a neuro-hypochondriac. :) It's at least partly the faulty nature of human perception. Have you heard about that experiment where people asked to count turnovers in a videotaped basketball game never noticed that someone in a gorilla costume came out on the court and started beating his chest?

Yours in invisible, meaningless, and possibly even fictional Lhermitte's-i-ness, :)

Nancy T.
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572651_tn?1333939396
Nancy, that is quite the story of non-diagnosis for you.  I still can't believe my good fortune, if you can truly call it that, of being diagnosed in less than two months at a very reputable MS center.  Almost daily I am reminded here how fortunate I am that my body clues were able to give my neurologist enough to give me an affirmative diagnosis, even though my symptoms are relatively mild.  I don't honestly know how I would react if I had my dx strung out over months and even years.  

If it makes a difference, I believe you! :-)
L
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669758_tn?1242334351
In defense of physicians, I too was an English major and as the incoming Preident-Elect of the Florida Society of Neurology I can promise you that there are many (if not most) neurologists who are very caring individuals.

In England neurologists act as consultants and see patients once a year. Many people in America are clammoring for socialized healthcare -- this would also mean less specialty care.

In reference to the Lhermitte's sign, please remember that it is not specific for MS. It indicates that there is some involvement of the (usually cervical) spinal cord -- such as a herniated disc.

Many neurological (and non-neurological) problems get worse in the heat.

The point of the above comments is that not everything is always as it seems. This is what makes our job so difficult, frustrating and also fulfilling.
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378497_tn?1232147185
I agree, and I was hoping that if you read this discussion, you wouldn't feel "bashed" or that your profession is being bashed. There are many people on the MS board who have great neuros.

My cspine is in quite good shape, disc wise, etc., and my B12 levels are great. The heat does exacerbate the Lhermittes, which seems relevant to me. I realize that these things aren't pathognomonic for MS, but....what is, really, especially fairly early on?

And...I saw a neuro today, one I'd seen who referred me to a neurosurgeon. Today, after reviewing a few things, including mention of the t spine myelopathy, he did say, "points to MS." I can't say that I'm "happy" about that, but he is going to order a 3T MRI and follow up with this.

As Quix has mentioned, this is a very involved and supportive group, a bit unlike some of the others on Medhelp. We appreciate your taking the time and effort to read and respond to all that we're saying here. And in doing so, you evidence the caring attitude that you assert on behalf of your profession.

Thanks again.

Bio
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152264_tn?1280358257
Ditto to Biowham's comments about good neurologists.

I can understand and accept ambiguity of symptoms and diagnosis and can understand the difficulty of subjective v. objective, but (like any copyeditor), I can't stand ambiguity of the message. I felt like the neurologists wanted/expected me to read between the lines of what they were saying, but was the underlying message "You have something wrong, but we can't say what it is" or "We really think you are a hypochondriac"? I honestly couldn't tell, but given that they said "don't need to see you again," I had to assume the latter.

(The PCPs' message was VERY clear, though: you've already seen neurologists, therefore we aren't going to talk about this anymore. All I did was START to ask "Do you agree that the neurologists have done enough to rule out MS, and we can leave it alone?", expecting my PCP to say "Yes," and I would have been happy, but before the question was fully out of my mouth, she laid into me with a huge, patronizing lecture about anxiety. No ambiguity in HER message, and the same with other PCPs. That was the day I realized I cannot talk to doctors anymore, because whatever I ask is interpreted as anxiety. The label is a permanent taint.)

Also ditto on the lack of explanation for Lhermitte's. My B12 is normal, the first neck MRI (2 years after Lhermitte's started) was normal, the second one (4 years later) showed bone spurs "flattening the anterior surface" of the spinal cord but with "normal cord signal," and the spine specialist (orthopedist whom I'd gone to see about my lumbar scoliosis) said the MRI showed nothing that would account for my symptoms. I decided, however, to take the bone spurs as the cause--most days, anyway :) --to satisfy that sense of puzzlement you get reminded of every time you bend your head down ("there must be SOME reason for this!").

I have heard that some people have Lhermitte's but normal cervical MRIs. So, it must be possible for whatever is causing a Lhermitte's case to NOT show up on MRI. I have never had a 3T MRI, though.

Good luck, Bio; hope you find something out soon.

Dr. Kantor, thanks for all your comments and info. Same to you, Lulu. :)

Nancy
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744256_tn?1234846264
Wow! I'm new here, but let me say that I can feel for you!

I was misdiagnosed (by an old GP, whom refused to forward me on to any specialists until I DEMANDED it) with everything from Gout, to Chronic Fatigue Syndrome, to being told that my blood tests showed that I had had Mononucleosis in the past (even though I always feel rotten, so I had NO idea when I had it) so it could linger on and make me feel poorly for up to 6 months. I had the old GP send me to a neurologist, where I used to live, and that neurologist did an EMG, which showed nerve damage, but never actually told me the results or told me what he thought caused it, other than to continually ask me if I did something to injure myself, such as heavy lifting or something, I suppose. I hadn't done anything. I actually had been snowed in and hadn't left the house. The most I did was walk from room to room in my house. All he did was give me a prescription for Antivert (an anti-dizziness med) and a script for a Vitamin A pill, which he said may or may not help the nerves to repair. REPAIR FROM WHAT?! I never got an answer to that question and never saw him again. Yes, I believe I've heard it all. I finally moved in 2007 and found a neurologist here. Although she seemed baffled at first, it was because she didn't realize that my old doctor had not done an MRI of my brain, only my spine, which couldn't draw a diagnosis on its own (although it did show a lesion). She also did a lumbar puncture, which she said would require that it show at least 2 "bands" (which I think also means plaques. ? I'd love to explain that, but I can't remember exactly - OF COURSE, lol). Anyway, I only had one. However, once she realized that I hadn't had an MRI of my brain (recently, anyway) she ordered one. Sure enough, there were 6 more lesions on my brain. The scary part about that, which I never have told her, was that I later found an old MRI report from about 3-4 years prior and it was supposedly clear. But, I'm not really sure how much faith I should put in those old doctors and hospitals, anyway.  When I first started going to my old GP about the relapse that ultimately got my diagnosis, I was trying to explain my symptoms and told them that I felt tingling sensations from head to toe and dizziness, sort of like I had felt when my parathyroid glands weren't working to produce calcium and ended up in ICU. However, I explained to them that my left leg was mostly numb, with some pins and needles sensations in areas and felt like my sock was wadded up on the bottom of my foot, my back was hurting very badly (blah, blah, blah). So I knew this was totally different. They asked what I used to do when that happened (with the calcium dropping) and I told them that they gave me Tums w/calcium when I was in the hospital, hoping to catch it before it went too far and I had to have IV calcium. So, their response was, "So go home and take Tums every day." Nice. And you want money for this office visit?

It was a long road for me to finally get the answers to the questions and symptoms that had plagued me and made me feel like I was a nutcase. In fact, I can trace it back to at least 1996 (I didn't get diagnosed until 2007), but that's only because it just so happened to be hitting me at the same time as cancer, that's how I can remember. Otherwise, I can't remember squat these days, lol. Initially, I thought that once the cancer was taken care of that things would go back to normal, since I thought that all this was caused by the cancer. Boy, was I wrong.

My point of this whole rambling mess is that I understand your frustrations. :)

Also, the Lhermitte's that you mentioned... I had NO idea that it actually had a name! This is EXACTLY what I just described to my neuro that she said was a classic symptom of a relapse! I had to Google it when I read your post, lol. She didn't tell me it had a name, or go into any detail at all. I just told her that when I have my son sitting on my lap, facing away from me, and lean forward and bend my head down to look at his face, it sends shocks all the way down to my toes and makes me feel dizzy/faint for just a brief moment. Well, I guess that explains why she so quickly and easily answered that I was definitely having a relapse, lol. I guess I better do some more research about my own disease! :-/ Of course, I'm also hurting quite badly and my old injuries from this disease are hurting MUCH worse right now, and spreading farther.

I wish you the best of luck and pray that you don't have to wait and suffer as long as I did! I know how heartbreaking it can be to be made to feel like it's all in your head or that you're just a whiner (that's how they made ME feel, anyway).

Someone else mentioned that they'd like to send a letter or something to their old doctor and tell them that they've found out they have MS. Well, I sort of did. I had a friend from back home that was still going to this same doctor's office (the GP) and I had her tell them for me, in person and IN THEIR LOBBY. I'm happy to report that I recently found out that this doctor's office is now closed and that doctor is no longer practicing... In fact, he's in trouble for not paying his bills AND taxes!

Sorry for rambling. Feel free to message me! I know how you're feeling. :)
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744256_tn?1234846264
I also meant to mention that I am hypothyroid as well, due to thyroidectomy for cancer in '00 and RAI in '02. I'm not sure how they treat autoimmune thyroid, I'm not familiar with that. Since I had metastatic carcinoma, I have to keep my thyroid levels in the hypo range, to avoid regrowth. So, I feel your pain in more than one aspect, although somewhat different, perhaps. ;)
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378497_tn?1232147185
Hi, Chunky, that was quite a saga. What a mess.

Just FYI, the LP draws your cerebrospinal fluid for analysis, and one thing they're looking for are "bands" that show up on a lab test (if you're dying to know that process, I can tell ya). They compare the numbers of these bands that show up from analysis of your spinal fluid and the numbers that you have in your peripheral circulation (blood). Any extras in the spinal fluid are indicative of specific inflammation there--which can be attributable to several things, including MS. The standard is that 0-1 extra bands = "negative" results, so that's why yours was "negative." I think the specificity of two bands is such that they make that the cutoff for "positive"; a single band has a decent likelihood of showing up on the test for no good reason. There's a nice image suite of these at this site: www-dot-antibodypatterns-dot-com/ief-dot-php (put in periods where I've put -dot-).

It's odd that no one paid much attention to your spinal lesion. The "lesions," if they're referred to as "plaques," are areas of demyelination/scarring. They show up white against "normal" tissue on T2 MRI images because of differences in water content between healthy and scarred/diseased tissue. If they're obviously because of demyelination, they're called "plaques," I believe.

So...O-bands (the O stands for "oligoclonal," which refers to antibodies, one of the responses to immune challenge) are from your spinal fluid, and plaques are associated with MRI images.

Bio
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378497_tn?1232147185
I no longer have a thyroid. After I had the EBV (mono), a year later, my thyroid went completely haywire--huge nodules all over it, no TSH, high TPO antibodies--and they took that sucker out.

Bio
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744256_tn?1234846264
Well, once the old GP did the MRI to find the lesion, they were paying attention to it, just not wanting to actually do anything about it in a timely manner or send me on to specialists to figure out what it was. The biggest problem was that they basically FORGOT to tell me, before I left from the FIRST MRI, that the technicians saw something and requested that I be rescheduled to come back for a more extensive MRI (since they couldn't actually do more than the doctor had ordered) and they were supposed to scheduled me to come back before I left. This didn't happen until I went back to the doctor and they asked me about it, as if I was supposed to know. Then, the software/program at Cleveland Clinic (where the MRI was read) that they send all of their lab and scan reports through electronically was down and they supposedly didn't have the report from the second MRI, which was a lie. I called Cleveland Clinic and they told me that they DID send the report and that my doctor's office DID have it and had for several days. Even if it were true, there are still fax machines and telephones! Not only that, but my husband is actually a programmer for exactly those types of lab/hospital systems. He's on-call 24/7. They don't just let those things "break down" for days on end. In fact, if it goes down, which rarely happens, unless there's a problem with the client's server or something, the problem is always resolved within a couple of hours (if that) and he doesn't stop working until it is. They're not going to let a lab system, where patients' lives could be depending on those results, be down for days. Again, nonetheless, that's what telephones and fax machines are for. It was just a mess. Period.

As far as the bands and plaques, I understood all that stuff when it was first explained to me, I just don't remember now, lol. I suffer from CRS (Can't Remember S***). ;)

You are on thyroid replacement hormones, right?
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572651_tn?1333939396
Ladies, thanks for the amazing lessons here - I just kept reading and reading more.  And thanks for the additional dx for me - CRS - now if only I'll remember that name!

I heard "anxiety" as my dx for chest pains from the GI doctor this week - first time in a year of this saga that a doctor couldn't say "I don't know" and instead grabbed for that all encompassing, CYA diagnosis.  I guess I'll go back to my cardiologist and talk about coming off my angina drugs since my chest pain according to the gastroenterologist is nothing but anxiety.  It sure will save me some $$$ if I can stop those.  LOL

Sorry, I digressed with that a bit.  The point I want to make is no matter how untrue we know this suggestion of anxiety or psychosomoatic is, it still plants an idea in our brain and that idea can grow into doubts about our own symptoms.  When we start doubting we stop searching for answers.  This anxiety dx is common for women with heart symptoms and many are routinely dismissed when in actuality there are very real cardiac conditions underlying the symptoms. I can send you to a website full of women who have had near death heart events because doctors have patted them on the head and sent them home with a dx of anxiety.  

Real harm is being done to patients who hear anxiety as a cause from their doctors and they give up pursuing treatment,  either out of buying into the dx or getting so discouraged at not being believed they feel it is better to stop pursuing answers.  Once you get anxiety stuck on your charts it takes so much more energy to work with the medical system.  

That's my two cents,
Lulu
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I agree that neurologists are like most specialities and, indeed, like most professions.  They represent an entire range of caring and skill from honorable and brilliant to uncaring and stupid.

On the MS Forum we advocate leaving dismissive, arrogant, and poorly educated  doctors behind and searching for one who will listen to you, look at you and think.  The "shopping" is not for a diagnosis, but for a physician who will try to help.

Our forum has a large number of people who have had horrifying experiences with their neurologists, as have I.  But, in the course of the last two years many have found those neurologists of whom Dr. Kantor speaks.  There would be no point in advising people to keep looking unless the qualities of compassion and intelligence were plentiful in the profession.

But, there really are some stinkers.

As for falling back on "anxiety" as the problem, that is often the answer of the dull mind.  

Quix
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378497_tn?1232147185
Well said, Quix.

I also meant to comment to Dr. Kantor--isn't it good to know that we have our English degrees to fall back on if we need them? ;-)

Bio
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147426_tn?1317269232
Me, too.  I have  a Spanish Literature degree to fall back on.  I just have to translate everything first.  ;-))
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378497_tn?1232147185
Espanol!? Realmente? Es mi idioma segundo...casi. Mi madre es profesora de espanol (y estudias medievales) a una universidad aqui, y por eso, puedo hablar y leer (y escribir) un poquito de espanol.

Thank goodness you have that fallback degree, Quix!

Bio
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669758_tn?1242334351
Bio,

Thank you for your explanation of oligoclonal bands and how they are not lesions -- you beat me to it.

"Oligo" = few; "clonal" = all the same, like "clones."

Also, I am glad you picked up on my comment "in defense of neurologists ..." and how it falls in line with all the historic "in defense" arguments.

I always fall back on literature, and we have been doing poetry readings at support groups. This is something we can try here if anyone is interested.
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378497_tn?1232147185
I'm all for that. I'm a major poetry geek.

Quix...um...sorry so very slow...but didja by any chance ever parse....Don Quixote???!?

Ole!

Heh. Just occurred to me that perhaps that's why you chose that handle. Or...maybe you just have a thing for windmills?

Bio
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147426_tn?1317269232
Showoff  :))  Si, de veras.  Yes, I read the entirety of Don Quixote in the original renaissance Spanish.  That was an ordeal as there are several archaic tenses and many unique words.

Q
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378497_tn?1232147185
You should meet my mother--she's an "Ibero-Romance" linguist. She teaches grad-level Spanish lit, but her scholarly work is middle-French, of all things. I bet those archaic tenses were tough. It's hard enough to parse the archaicisms and neologisms (for his time) in Shakespeare.

We sure are a well-rounded bunch. ;-)

Bio
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572651_tn?1333939396
Ok all you Doctors, you are amusing me with this discussion but I only have a partial brain anymore so this is pretty easy to accomplish.  It definitely reminds me of work, and the break room conversations.  Working in academics is an entirely different world than anything else out there.  

As for the poetry readings, bring it on.  I can butcher an author's intentions and meanings with the best of them!  Misinterpretations can be my specialty if no one else has claimed that arena.


Lu
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749148_tn?1302864559
Hi,
I'm new here so if I'm being out of line let me know.  I was diagnosed with PPMS (primary progressive) 8/08.  I have a positive MRI for lesions and lumbar puncture showed increased bands.  I have a hx of falling (thought I was a clutz) I have been diagnosed with other autoimmune disease ie: fibromyalgia, hashimoto's, osteoarthritis and have a family hx of PMR, Rheumatiod Arthritis, graves disease, hypothyroidism and many other I'm sure... I also have memory issues.  I am currently under the care of a neurologist from Beth Israel Deconess Medical Center's Multiple Sclerosis Division in Boston, MA and have been told there is no "known treatment" for PPMS.  I do however take many medications to help lessen the symptoms.  I hope I helped.  Debbie
~live as if all your dreams came true~
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