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Former and current Limboland residents: how long?
I am wondering from former residents of the unenviable Limboland: how long did you reside there, and what was it that finally clinched your diagnosis?
And then maybe, current limbolanders, how long have you been in limbo, and what do you think it is that's holding back your diagnosis?
My answer: I have been in limbo for 6 years. I have multiple white matter lesions on brain MRI and family history of MS, but negative/normal everything else under the sun, and symptoms that do not exhibit the characteristic pattern for MS (i.e. not obvious attacks). I just wonder how long it's possible to remain without answers. I know it could be a long long time. But I am curious about others' experiences, especially what finally earned one's diagnosis.
Thanks,
Laurel
And then maybe, current limbolanders, how long have you been in limbo, and what do you think it is that's holding back your diagnosis?
My answer: I have been in limbo for 6 years. I have multiple white matter lesions on brain MRI and family history of MS, but negative/normal everything else under the sun, and symptoms that do not exhibit the characteristic pattern for MS (i.e. not obvious attacks). I just wonder how long it's possible to remain without answers. I know it could be a long long time. But I am curious about others' experiences, especially what finally earned one's diagnosis.
Thanks,
Laurel
I'm a resident of limboland. I've been actively seeking a DX since March of 2007, but my symptoms go back as far as 1998.
The hold up is, from what I've been told, is the "lack of evidence". I have the symptoms, abnormalities on exam of MS but the MRIs are lacking in the lesion department. My 4-5 lesions are atypical for a place that MS presents and are considered "nonspecific". So the neuros don't feel comfortable with DX me until I have the evidence. All mimics have been tested again...and again....so I'm stuck for now.
The hold up is, from what I've been told, is the "lack of evidence". I have the symptoms, abnormalities on exam of MS but the MRIs are lacking in the lesion department. My 4-5 lesions are atypical for a place that MS presents and are considered "nonspecific". So the neuros don't feel comfortable with DX me until I have the evidence. All mimics have been tested again...and again....so I'm stuck for now.
Am I allowed to reply, though my ultimate dx was Lyme disease and not MS? Too late! "Old timers" here may remember me, and a big wave "hello" to those that do! To the newbies, hello to you as well, and I hope you take a moment to read my story.
I started seeing doctors in Jan 08, so while my symptoms go back further I guess that began my official term in limboland. The list is long, but highlights of my presentation included a relapsing-remitting pattern of largely sensory issues. I went on to develop mild double vision/eye pain/flashing lights, cog fog, dizziness, fatigue, and more.
4 neuros, 1 rheumie, and about a dozen primary care office visits, with 2 full rounds of blood work, 2 brain MRIs, 1 spin MRI, and an LP, came up with zip in terms of a diagnosis. This included an out-of-state visit to a leading East Coast university hospital.
My most outstanding test result was brain lesions on MRI, though only 2-3 appeared "concerning" for MS.
Each doctor/specialist explicitly told me that Lyme disease had been ruled out. I was told that Lyme couldn't cause all of my symptoms, and since I didn't recall a tick bite or have a "bull's eye" rash, I surely didn't have it. I tested negative twice through blood, and my spinal fluid was negative as well.
I was given steroids, and had an excellent response at first. I was told that further ruled out Lyme disease. A month later, I developed joint problems and was more sick than ever. I was still told no Lyme, maybe fibro.
I ultimately sought out a doctor outside of my insurance who gave me a clinical diagnosis of Lyme, based on exclusion and history. (Yes, contrary to popular opinion, Lyme can be diagnosed clinically and through exclusion.) I'm at nearly 7 months into treatment, to which I've had an obvious response though I'm not yet healed.
The testing for Lyme is two-tiered, and if you are negative for the first part, popular guidelines deny you the second part. These guidelines are coming up for review this July. Although review of treatment guidelines is a normal part of IDSA procedure, this is the first time it has been *legally ordered* to invite an independent panel of doctors and scientists to conduct the review.
(Not trying to bore ya'll with current events, just highlighting that there is reason to be concerned over the testing and its reliability.)
Hopefully my situation is truly uncommon. I share it because others who do not have a diagnosis should be aware of how difficult it can be to diagnose and treat a disease that is popularly portrayed as being easy to detect, test for, and cure.
Unfortunately, Lyme can present in ways that both mimic many other conditions and fall outside of the "flu/rash/arthritis" picture often associated with this tick born disease. Couple that with the politics and controversies and strongly polarized medical opinions surrounding this disease, and you've got a situation that is as clear as mud.
I'm not in anyway trying to open up a can of worms by bringing this up. I am aware that some people in the Lyme community (not here on MedHelp, just in general) have extreme views about Lyme that they try to impose on others. That's not my intent, nor do I share in radical takes on this disease.
I'm just popping in to raise awareness that people (like me) get caught in the middle of the confusion and misinformation surrounding this misunderstood, difficult to diagnose, and, especially in late diagnoses like mine, difficult to treat infectious disease.
For all of those in limbo, my heart goes out to you. Many wishes for speedy and correct diagnosis and treatment!
I started seeing doctors in Jan 08, so while my symptoms go back further I guess that began my official term in limboland. The list is long, but highlights of my presentation included a relapsing-remitting pattern of largely sensory issues. I went on to develop mild double vision/eye pain/flashing lights, cog fog, dizziness, fatigue, and more.
4 neuros, 1 rheumie, and about a dozen primary care office visits, with 2 full rounds of blood work, 2 brain MRIs, 1 spin MRI, and an LP, came up with zip in terms of a diagnosis. This included an out-of-state visit to a leading East Coast university hospital.
My most outstanding test result was brain lesions on MRI, though only 2-3 appeared "concerning" for MS.
Each doctor/specialist explicitly told me that Lyme disease had been ruled out. I was told that Lyme couldn't cause all of my symptoms, and since I didn't recall a tick bite or have a "bull's eye" rash, I surely didn't have it. I tested negative twice through blood, and my spinal fluid was negative as well.
I was given steroids, and had an excellent response at first. I was told that further ruled out Lyme disease. A month later, I developed joint problems and was more sick than ever. I was still told no Lyme, maybe fibro.
I ultimately sought out a doctor outside of my insurance who gave me a clinical diagnosis of Lyme, based on exclusion and history. (Yes, contrary to popular opinion, Lyme can be diagnosed clinically and through exclusion.) I'm at nearly 7 months into treatment, to which I've had an obvious response though I'm not yet healed.
The testing for Lyme is two-tiered, and if you are negative for the first part, popular guidelines deny you the second part. These guidelines are coming up for review this July. Although review of treatment guidelines is a normal part of IDSA procedure, this is the first time it has been *legally ordered* to invite an independent panel of doctors and scientists to conduct the review.
(Not trying to bore ya'll with current events, just highlighting that there is reason to be concerned over the testing and its reliability.)
Hopefully my situation is truly uncommon. I share it because others who do not have a diagnosis should be aware of how difficult it can be to diagnose and treat a disease that is popularly portrayed as being easy to detect, test for, and cure.
Unfortunately, Lyme can present in ways that both mimic many other conditions and fall outside of the "flu/rash/arthritis" picture often associated with this tick born disease. Couple that with the politics and controversies and strongly polarized medical opinions surrounding this disease, and you've got a situation that is as clear as mud.
I'm not in anyway trying to open up a can of worms by bringing this up. I am aware that some people in the Lyme community (not here on MedHelp, just in general) have extreme views about Lyme that they try to impose on others. That's not my intent, nor do I share in radical takes on this disease.
I'm just popping in to raise awareness that people (like me) get caught in the middle of the confusion and misinformation surrounding this misunderstood, difficult to diagnose, and, especially in late diagnoses like mine, difficult to treat infectious disease.
For all of those in limbo, my heart goes out to you. Many wishes for speedy and correct diagnosis and treatment!
Hi, in LL since Jan 08, 2 lesions some mild sx. All mimics R/O. Being watched, Dr. says suspicious MS. Oh and poss ON, thats what started this rollercoaster ride.
lala
LL
lala
LL
Hi there,
I think I take the award for the longest standing limbo lander on this website.
By the way this is the condensed version of events.
1995 - Aged 29, First "attack", sudden onset of pins and needles, burning, numbness etc., bladder problems and weakness in left leg.
MRI and LP both normal (spinal one not performed), IV steriods for 3 days and hospitalised. Neuro's conclusion 99% certain I had MS but due to lack of lesions on MRI or positive LP was told probable MS. Abnormal VEPs, abnormal examination. Tested for everything and anything. Both GP and Neuro still said although my testing was normal i could not rule out.MS.
Several MRIs later both spinal and brain with no results my neuro said well maybe it's not MS but he still thought it was neurological. Some symptoms inbetween but no real worsening or new symptoms.
Years later and I mean years later. Twelve to be exact I felt like I was having a new attack, so I found a new neurologist whom I am still currently seeing. Three MRI and one LP and the nerve studies and still all normal. Yay. This neuro believed that I had a single episode of TM and was just flaring symptoms but now hasn't ruled out reoccuring TM or now it changing over to become MS.
So still in limbo, I am starting to wonder because all my MRI are normal that perhaps it isn't just some weird migraine headache thing? Neuro sort of diagnosed me with TM, he refers to it as TM in all my visits and tells me where he thinks the lesions are. Apparently spinal MRI is not fullproof? Who knows... giving up.
On limbo a friend of mines aunty went 20 years between attacks, first one was ON second one put her in a wheelchair and now she is progressive MS. So it can happen.
It has now been 13 years, but I have read where people can have a very mild form of MS where you can go years in between attacks, so who knows...all I know that all the neuro's I have seen haven't ruled it out completely but I think I must show something pretty conclusive on physical exam that makes them think this.
13 years and still counting..:-)
Udkas.
I think I take the award for the longest standing limbo lander on this website.
By the way this is the condensed version of events.
1995 - Aged 29, First "attack", sudden onset of pins and needles, burning, numbness etc., bladder problems and weakness in left leg.
MRI and LP both normal (spinal one not performed), IV steriods for 3 days and hospitalised. Neuro's conclusion 99% certain I had MS but due to lack of lesions on MRI or positive LP was told probable MS. Abnormal VEPs, abnormal examination. Tested for everything and anything. Both GP and Neuro still said although my testing was normal i could not rule out.MS.
Several MRIs later both spinal and brain with no results my neuro said well maybe it's not MS but he still thought it was neurological. Some symptoms inbetween but no real worsening or new symptoms.
Years later and I mean years later. Twelve to be exact I felt like I was having a new attack, so I found a new neurologist whom I am still currently seeing. Three MRI and one LP and the nerve studies and still all normal. Yay. This neuro believed that I had a single episode of TM and was just flaring symptoms but now hasn't ruled out reoccuring TM or now it changing over to become MS.
So still in limbo, I am starting to wonder because all my MRI are normal that perhaps it isn't just some weird migraine headache thing? Neuro sort of diagnosed me with TM, he refers to it as TM in all my visits and tells me where he thinks the lesions are. Apparently spinal MRI is not fullproof? Who knows... giving up.
On limbo a friend of mines aunty went 20 years between attacks, first one was ON second one put her in a wheelchair and now she is progressive MS. So it can happen.
It has now been 13 years, but I have read where people can have a very mild form of MS where you can go years in between attacks, so who knows...all I know that all the neuro's I have seen haven't ruled it out completely but I think I must show something pretty conclusive on physical exam that makes them think this.
13 years and still counting..:-)
Udkas.
Hi! I'm in limboland myself. It will be a year on July 4th weekend. I had my first attack last year, but the MRIs and EMG were clear. (Didn't like the neuro.) The only negative test was my sed rate, but they couldn't find the source of the inflammation or bring it down. My internist still thinks it's MS and decided that a wait-and-see approach would be best since my symptoms tapered off in the fall. Then I started getting symptoms again this May. I saw a new neuro (worse than the first) and I'm scheduled for another MRI and an EEG on July 7th. I started seeing pink this week (the neuro wasn't concerned about this), so I went to the eye doc. My optic disc was pale, but the nerve looked okay. I plan to mention this to my internist and try another neuro. I'm anxious to see what the MRI shows this time. I hope you get some answers, too. :)
For those of you looking for a new doctor, check out my thread about choosing a good doctor... I think we can all sympathize with the author of the article.
Started noticing vague weird things about 2 years ago, though my bladder first did funny things a bit longer then that. For me, I really noticed symptoms off and on since Fall 2007 and they have since progressed / kept up. Kept going back to the dr. with some new weird thing or other, and would be told it was probably just a simple thing (ie carpal tunnel) but the tests never supported these simple diagnosis.
I have had several spans of about 8 weeks where I really felt bad, (fatigue, leg drag etc) but luckily I do not always feel so bad. Now that is summer up here it's back to the hot and muggy (our first heat alert issued yesterday). I get the whole dizzy / off balance thing a lot more from being to hot. Thank goodness for air conditioning ;)
I have a clear MRI of my head (x2), and have been told no MS, (good) but no answers either. Waiting for a spinal MRI at the end of July. Have been told I may have had a spinal injury.
I have had several spans of about 8 weeks where I really felt bad, (fatigue, leg drag etc) but luckily I do not always feel so bad. Now that is summer up here it's back to the hot and muggy (our first heat alert issued yesterday). I get the whole dizzy / off balance thing a lot more from being to hot. Thank goodness for air conditioning ;)
I have a clear MRI of my head (x2), and have been told no MS, (good) but no answers either. Waiting for a spinal MRI at the end of July. Have been told I may have had a spinal injury.
I am in linbo land with that annoying good for nothing dx of demylenating disease.
I entered July 2008 so almost a year. I had symptoms for years but always blamed them on something else...worked to hard, not enoungh sleep, the kids have required a lot of attention, didn't eat right, was on my feet to long, to much...you name it used it.
Now I hurry up and wait, terry
I entered July 2008 so almost a year. I had symptoms for years but always blamed them on something else...worked to hard, not enoungh sleep, the kids have required a lot of attention, didn't eat right, was on my feet to long, to much...you name it used it.
Now I hurry up and wait, terry
Not a good day for me to consider this question. Had nasty balance issues last July for a bit, then continuously since October. Numerous other symptoms from time to time, especially visual issues that can't be explained. No idea where I'm headed now, after an unpleasant phone conversation with a neurologist last night. He was my second general neuro. First was a true quack. Next I went to an MS specialist who, as it turns out, is best known for authoring studies and obtaining grants. Not being a textbook case, he had no use for me, and referred me to the guy with whom I spoke last night (though the expressions on the faces of his staff when he ordered that referral sure made me wonder). My hope presently lies with the neuro-ophthalmologist I'm to see for follow-up next week. In summary, somewhere between 8 and 12 months, and the clock's still ticking.
7 years... MS specialist says my physical sx are classic MS, but no lesions on brain or spine. So, no dx. Everything else that they can think of has been ruled out--several drs (neurologist, neurosurgeon) have said they can't imagine what else it could be other than MS, but no lesions = no dx = no DMD.
Hi there! Fellow limbolander here ... I've been having symtoms for about eight years now, and went in for the more serious stuff (tremors) only to be told it was nothing important.
Like you, I have lesions on my MRIs but no official diagnosis without a spinal puncture yet. This has all been in the past year or so. Currently a "possible MS" label, but no treatment. That's partially my fault b/c I refuse to continue seeing the doctors where we live b/c we are overseas and I'm just really uncomfortable. I will be stateside soon and will resume then. Hopefully with a great doc.
I wish you the best of luck. This is a frustrating thing to go through. I sometimes feel like a hypochondriac or something, but I know what I'm going through truly is real and has been even seen by my docs and family, friends ... but without knowing what it is sometimes ... well, you know cuz you are there.
Keep faith and best wishes.
Like you, I have lesions on my MRIs but no official diagnosis without a spinal puncture yet. This has all been in the past year or so. Currently a "possible MS" label, but no treatment. That's partially my fault b/c I refuse to continue seeing the doctors where we live b/c we are overseas and I'm just really uncomfortable. I will be stateside soon and will resume then. Hopefully with a great doc.
I wish you the best of luck. This is a frustrating thing to go through. I sometimes feel like a hypochondriac or something, but I know what I'm going through truly is real and has been even seen by my docs and family, friends ... but without knowing what it is sometimes ... well, you know cuz you are there.
Keep faith and best wishes.
Ten years in so-called limboland.
What is holding up a diagnosis (of something or other)?
In the first four years, it was a lack of significant objective evidence, though I did not have extensive testing (no LP, VEP, SSEP, or spinal MRI except cervical). I had nonspecific brain spots, abnormal auditory EPs, hearing loss, dizziness, and a bunch of sensory symptoms including Lhermitte's and bilateral trigeminal-nerve symptoms.
In the last six years, the "holdup" has been a lack of interest on the part of doctors and my own unwillingness to ask any doctor to please take a look at the whole thing again. Because I was dismissed as a hypochondriac, as having "benign paresthesias," yet knew something was wrong, I became very depressed at not being able to talk to doctors and believed I'd never get a correct diagnosis of anything (MS or otherwise).
I still believe I'm never going to get a diagnosis, but I did request a neuro referral last week due to a certain alignment of the planets. At least I'm going to make him or her give me a plausible theory for the Lhermitte's, even if nothing else. I need closure on this. If I don't have MS after ten years of symptoms (or 26 years, depending on how you count), then I don't have MS. I just need a plausible theory for a few things and a sense of perspective and understanding about the symptoms.
I do believe some of us are going to remain permanently undiagnosed.
Nancy
What is holding up a diagnosis (of something or other)?
In the first four years, it was a lack of significant objective evidence, though I did not have extensive testing (no LP, VEP, SSEP, or spinal MRI except cervical). I had nonspecific brain spots, abnormal auditory EPs, hearing loss, dizziness, and a bunch of sensory symptoms including Lhermitte's and bilateral trigeminal-nerve symptoms.
In the last six years, the "holdup" has been a lack of interest on the part of doctors and my own unwillingness to ask any doctor to please take a look at the whole thing again. Because I was dismissed as a hypochondriac, as having "benign paresthesias," yet knew something was wrong, I became very depressed at not being able to talk to doctors and believed I'd never get a correct diagnosis of anything (MS or otherwise).
I still believe I'm never going to get a diagnosis, but I did request a neuro referral last week due to a certain alignment of the planets. At least I'm going to make him or her give me a plausible theory for the Lhermitte's, even if nothing else. I need closure on this. If I don't have MS after ten years of symptoms (or 26 years, depending on how you count), then I don't have MS. I just need a plausible theory for a few things and a sense of perspective and understanding about the symptoms.
I do believe some of us are going to remain permanently undiagnosed.
Nancy
Officially 5 months. However, I'd had symptoms off and on for 20 years. Just that by the time the symptoms got to where I thought maybe I should see the doctor about them, they would disappear. Then last summer the symptoms came to stay and I entered limboland.
Current limbolander here; I officially entered it Feb. 6, 2008, when I woke up with tremors, that progressed to where it was difficult for me to walk straight, and then came extreme fatigue. I had a brain MRI on the 22nd, that showed multiple white matter lesions "far and away most likely to be multiple sclerosis" according to the neuro-radiologist.
I've been to 3 neurologists that looked at the same MRI and said small vessel ischemic disease, despite no predisposing factors. Many negative tests, ruling out many things, and a negative LP. I finally got a 3T MRI that raised my hopes, but MS specialist stuck with SVID despite note from cardiologist disproving her theory.
I discussed matters with her, and she dismissed me as a patient; I was planning on finding a new neuro, anyway.
I'll be seeing a new MS Specialist in September (while still seeing a rheumatologist in the meantime, and undergoing vestibular physical therapy). I'm hoping he'll see what the others have not, and truly consider my symptoms, even though they are sensory.
So, Laurel, I'll let everyone know when/if I get my diagnosis, and what clinched it. I really think the 3T MRIs will help, as they show so much more, so much more clearly.
My latest MRI reports even mention lesions in my c and t spine, though the radiology reports were really poorly done, so I'm not sure if they're really there.
I think persistence and research pays off, learning how to communicate clearly with your neurologist without bruising their egos (not possible with some!). It helps to know what tests need to be done, what needs to be ruled out, and keep copies of all your records.
Sometimes you have to move on to a new doctor; sometimes you have to repeat the process several times. I think our health is worth it.
Hang in there,
Kathy
I've been to 3 neurologists that looked at the same MRI and said small vessel ischemic disease, despite no predisposing factors. Many negative tests, ruling out many things, and a negative LP. I finally got a 3T MRI that raised my hopes, but MS specialist stuck with SVID despite note from cardiologist disproving her theory.
I discussed matters with her, and she dismissed me as a patient; I was planning on finding a new neuro, anyway.
I'll be seeing a new MS Specialist in September (while still seeing a rheumatologist in the meantime, and undergoing vestibular physical therapy). I'm hoping he'll see what the others have not, and truly consider my symptoms, even though they are sensory.
So, Laurel, I'll let everyone know when/if I get my diagnosis, and what clinched it. I really think the 3T MRIs will help, as they show so much more, so much more clearly.
My latest MRI reports even mention lesions in my c and t spine, though the radiology reports were really poorly done, so I'm not sure if they're really there.
I think persistence and research pays off, learning how to communicate clearly with your neurologist without bruising their egos (not possible with some!). It helps to know what tests need to be done, what needs to be ruled out, and keep copies of all your records.
Sometimes you have to move on to a new doctor; sometimes you have to repeat the process several times. I think our health is worth it.
Hang in there,
Kathy
I was never in Limboland, but I hate to see somebody's answer not being answered... ;-)
I do know somebody that was finally diagnosed with PPMS after debilitating symptoms for years and years. They did an MRI of the spine, and found several lesions in there. He doesn't have attacks either, but he is taking one of the DMDs, so I guess the doctor thinks there's some reason to bother.
With multiple white matter lesions, I have to wonder what the holdup is. Take a look at the McDonald Criteria (in the Health Pages, at the upper right.) With lesions in the brain, the next step is to send you in for a VEP (visual evoked potential.) You'll also need an MRI of the spine. I assume you've had a spinal tap, which came back negative.
I do know somebody that was finally diagnosed with PPMS after debilitating symptoms for years and years. They did an MRI of the spine, and found several lesions in there. He doesn't have attacks either, but he is taking one of the DMDs, so I guess the doctor thinks there's some reason to bother.
With multiple white matter lesions, I have to wonder what the holdup is. Take a look at the McDonald Criteria (in the Health Pages, at the upper right.) With lesions in the brain, the next step is to send you in for a VEP (visual evoked potential.) You'll also need an MRI of the spine. I assume you've had a spinal tap, which came back negative.
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