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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?
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?
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
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
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
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
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.
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.
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
If it makes a difference, I believe you! :-)
L
MEDICAL PROFESSIONAL
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.
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.
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
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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