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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?
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
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
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. :)
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. :)
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. ;)
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
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
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
Bio
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?
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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