Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Anyone with a 'negative' MRI brain scan had a second opinion?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Research 1st, Oct 13, 2014.

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Have you ever had a 2nd opinion on your 'normal' MRI brain scan?

  1. Yes I challenged the incorrect diagnosis successfully.

    2 vote(s)
    10.5%
  2. No I accepted the negative finding diagnosis.

    12 vote(s)
    63.2%
  3. I have never had an MRI brain scan.

    5 vote(s)
    26.3%
  1. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello.

    I had an MRI recently and was told the result was entirely normal, and with great emphasis placed on the normal part. Due to this I was refused a follow up neurological appointment to discuss my ongoing worsening disability.As happens to so many other patients, I'm just left with everything put down to 'CFS' and nothing further explored.

    By getting access to the MRI referral from the doctor to the MRI clinic, I notice the neurologist I saw oddly stated that my orthostatic ME symptoms (dizzyness/vertigo etc) are due to a functional hysteria, before the scan took place. Unfortunately, the radiologist read this before they did my brain scan.

    I am therefore somewhat suspicious the negative result isn't actually entirely normal considering that ME CFS is not a form of hysteria at all, but a physical condition. I have asked for the full radiology report and am so far without luck.

    The neurologist told me previously that only a brain tumour or MS would cause my vestibular symptoms and as they are negative, there is nothing to worry about and certainly no link to viruses (I have chronic viral infections).

    I would like to ask people their experiences with MRI brain scan results please, and if you have ever had a second opinion and if so was this result also negative or not?

    Would you trust an 'online' MRI referral service or would you only attend a private hospital neurologist and request they look at your result.

    Thank you for any feedback.
     
    golden likes this.
  2. duncan

    duncan Senior Member

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    I've had a couple MRI's. One showed no lesions or foci, the second demonstrated some.

    I am more curious about the verdict concerning your vestibular system. I had mine checked out by a world class lab because of unrelenting vertigo/dizziness (not terrible, just enough to be unsteady). All told, it involved eight hours of testing. I was told I had severe bilateral vestibular damage - and I have neither MS nor a brain tumor.
     
  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I had a 15 min brain scan. Spinal was refused and I've never had a lumbar puncture.

    The brain scan had two views of the brain. (T2 Sagittal and T1 Axial). I don't know if other views are needed, such as Coronal? I've seen other people's brain scans online and they have a front view and back view of the head (as if standing infront or behind someone's head looking inside). I didn't have that done, maybe it doesn't matter.

    My problem is I am told that ME doesn't exist, and so all my neurological symptoms have to be 'beliefs' Such as the 'belief' I am suffering from chronic dizziness. (My eyes involuntary wobble a lot during a vertigo attack, much worse laying in bed and at night). The neurologist said that as my eyes weren't wobbling when they tested me, it doesn't matter. It does matter as I can't see when it does it and it feels dreadful as you most likely know too. All you can do is keep perfectly still bolt upright in bed and not move your head.

    If the neurologist I saw hadn't been so skeptical of ME CFS, I'd reluctantly accept the negative MRI brain scan, even though I can't do anything and previously I could at least walk a little inside the house.

    In the UK we get a 'free' (tax payer funded health service), and from talking to other UK patients one normally gets a pretty rough deal if you tell anyone you have ME. I kept it quiet, but unfortunately the neurologist has their own opinion about ME CFS patients, believing them to be neurotic.

    My worry is this has made the radiologist not review my brain scan at length. Thank you for replying and sorry to hear you have problems yourself with balance. It's very hard to cope and I can't have a bath or shower and sleep in my clothes.

    Naturally, this is put down by a disbelieving doctor as attention seeking. Other than getting someone else to look at my brain scan I don't know what to do to be honest. It was a fluke on the day of the MRI I was able to tolerate laying flat for the procedure as usually this creates much worse 'room spin' (laying flat).

    May I ask what tests you had to diagnosed your bilateral damage? I was told there aren't any tests other than an MRI and chronic dizziness would be a brain tumor which they ruled out. Thanks.
     
    Countrygirl and Scarecrow like this.
  4. PennyIA

    PennyIA Senior Member

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    I had over six MRIs during the first few years of illness. They were ruling out brain tumors, stroke and lesions (MS)... since they found none of those, my scan was 'normal'. Admittedly, at least I didn't have the negative experience of something on my records indicating any suspicion around it not being physical.

    I did have a horrid experience with the nuerologist reading my last set of scans... he refused to consider any treatment around OI, POTs, etc... unless I consented to a psychological exam. Naturally, if I'm ill and he can't identify it, I must be insane. Sigh.
     
  5. duncan

    duncan Senior Member

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    I don't remember what they are called. I could search through my records but that could take days. :)

    So let me do this: First, I will describe the tests. Second, I recommend you check out the vestibular disorders association - just google vestibular and you will find it. You should be able to get the names of the tests there.

    Ok, first they did a barrage of auditory tests. This took about 30 minutes or so. You know the tests: put your finger to the ear that the sound emanates from.

    Then they put me in a small chamber with a 360 degree revolving chair. They covered my eyes with a plastic mask that had some sort of screen on it? Or I could only see out of part of it? Sorry, - i cant quite remember. I had these tests the same day I had a lumbar puncture, so my memory....Anyway, they turned out the lights and in the pitch black room the chair whirled around and I was required to keep my eyes focused on a projected red dot. I am told it makes most normal people nauseous. It had no effect on me.

    Let's see. They put me in a harness in some contrived cardboard landscape and I had to tilt my body forward and backward till I felt to unsteady to stand.

    There was also a test where they blew hot air into my ears, warm mist really, and I was hooked up to some computers.

    I'm sorry I am being so vague. If it is important and you can't find the names of these tests on the vestibular website, I will track down the record of my test. I do remember they had like six major categories they tested for. And when they were done, they - there were two doctors - they sat me down and told me my left side was a complete train wreck and my right side was worse.

    I don't mean to promote Lyme, but every one knows Lyme is fond of the seventh cranial nerve - damage to it causes facial palsy. Your vestibular system is in part comprised of your 8th cranial nerve. So, Lyme is suspect for me, but I had a prominent ENT claim that was highly unlikely, so...Who knows?
     
    Last edited: Oct 13, 2014
  6. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I developed this chronic vertigo and also forget to say I now have a pain disorder called Trigeminal Neuralgia (TN) together in unison even before I took the drugs for TN, which I cannot tolerate, and cause dizziness as a side effect! I take tiny amounts of the drug and get stoned out of my mind and have to sit perfectly still all day looking straight ahead.

    As well as positional and standing upright, I get dizzy from 'thinking'. Naturally, no doctor has heard of this before when I tell them, that using your brain can give you worse dizziness or create it. I also can't watch TV anymore.

    TN apparently affects people with Lyme and MS. I don't know if people with MS CFS get TN as well, I know very little about TN as I was only recently diagnosed by another neurologist, but sadly not the one who ordered the brain MRI who is dismissive about ME CFS being physical.

    Even if I had these tests you kindly mentioned, there is a slight irony. Being too dizzy to have a test that provokes dizziness. So I'm stuck in the house.

    If only there was a test for Lyme that shows it's in your brain rather than your blood. My Lyme tests are low level positive, Igenex I have a positive band 41, and The LTT is again low level positive for Borrelia. Either way I've got Arthritis, Osteoporosis, Trigeminal Neuralgia, POTS, 'Sticky Blood', very high cytokines etc which is meant to all fit into a diagnosis of ME CFS but also Lyme if I have my facts correct. (Lyme looks very similar clinically to severe 'ME').

    It's very frustrating having decades of this keeping us all housebound, as so many other patients know. Perhaps it was foolish of me to believe an MRI wouldn't be normal. I thought it might show 'slight' changes, but the disbelieving neurologist says it's 100% normal.

    Maybe a PET or a SPECT is the next option, but before dropping the MRI result entirely I just wanted to know what to do, as I can't see a doctor to ask them their opinion as they won't give me a follow up appointment. I also wondered if an MRA (Arteries) or MRV (Veins) might look for blood flow abnormalities in the brain's blood supply an MRI might not be able to see.
     
    angee111 likes this.
  7. duncan

    duncan Senior Member

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    I have never used IgeneX, although I have spoken at length with its founder. I know they include two bands that most labs do not, which in part makes them, in some eyes, more liberal, in mine, more accurate. I don't know what tests you had done. There are so many co-infections, there are so many strains and species. And, of course, now there is miyatmotoi...

    Anyway, it's easier to get a TBD diagnosis with a blood draw than it is with a lumbar puncture - which is what they would want to do to see if you've neuro Lyme. It's difficult to get a Bb call in non-acute NB cases.

    SPECT scans are considered experimental in so many quarters. I have been trying to get one done in the US for close to a year now, and I've got scripts for it from an excellent ME/CFS doctor as well as my Lyme doctor. Back in the 90's a bunch of SPECT scan studies were performed, and were even used to track the efficacy of treatment protocols. But they've fallen out of favor, at least in the US, as far as my experience.

    PET may be a good avenue. No PET studies done in association with Lyme, though, as far as I can find. I had a PET scan done but I was not allowed to see its results and they would not provide a write up because it was for research purposes.

    I am sorry that I don't know how to advise you. I would go the SPECT route, but as I've said, I cannot even get that done with two excellent scripts under my belt.

    You say you have arthritis? As in swollen knees?? Have you had synovial fluid examined? That's classic Steere Lyme, but I would think you'd test positive for it on the IgeneX test.

    What so many of us ultimately are doing is building a case for whatever it is we have, or rather, has us. We are all forced to be our own advocates, and all too frequently, our own judge and jury.
     
    RustyJ likes this.
  8. SickOfSickness

    SickOfSickness Senior Member

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    Get the MRI report and films if you can. I'm in the US and we are entitled to a CD of the films or the actual films, and the report. It can take many weeks to get them and you must follow their procedure to request them.

    Then you can consider getting the films re-read. They will always ask your symptoms and usually jump to conclusions. A reading online may be trustworthy if it's a good neuro with good schooling.

    Sometimes the report will say abnormalities and the neurologist will not tell the patient about them.

    As Duncan said it is hard to get a SPECT.

    In your situation, I would try to get an MRA, Lumbar Puncture, and spinal MRI. But I would expect them to come back normal, and then doctors would think you're crazier, since you had so much tested. Most symptoms aren't going to show up as brain, spine, or CSF abnormalities. Sometimes patients have extreme symptoms and nothing shows up.
     
  9. snowathlete

    snowathlete

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    I had an MRI which came back ' normal' though some very small anomalies were reported . I posted it on here somewhere to ask if anyone knew what it meant or could compare results but I don't think anyone replied to that one which I took to mean that no one really knows. Maybe years later there will be better understanding.
     
  10. Scarecrow

    Scarecrow Revolting Peasant

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    'Normal', which I've accepted. I'm glad I've had it done as I'm aware that 'normal' means a rule out of the common things they look for. I don't think that they would have commented on minor anomalies, regardless of whether they found any, as they obviously wouldn't want to encourage any of my 'false illness beliefs'.

    I didn't really think that anything would be found but as I had a period of amnesia following a respiratory infection, and I have much more severe cognitive problems than physical, I did wonder if anything would show. I do think it's good to have had a snapshot as I can get a second opinion at a later date if I choose.
     
  11. xxRinxx

    xxRinxx

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    I had a 'normal' brain scan..save for they said I had blips of something odd or another, my brain is too foggy to remember what. my point is that something was peculiar but they labeled it as 'normal' anyway:/ haven't had the heart to try again.
     
    Jammy88 likes this.
  12. Martial

    Martial Senior Member

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    Lots of infections can cause vertigo issues like lyme and certain co infections, gut dysbiosis, candida, parasites, etc, I had an abnormality in my frontal cortex on one MRI test. According to one of my doctors he thought it was brain injury from infection, another said its a spot of hyper intensity signaling low blood flow. I also did neurological testing on my brain health which came back pretty poorly. I even felt I did really well on the test and my reflexes and reaction time were top notch, apparently the electrical impulses during this came back abnormal though. Another huge cause of vertigo and balance issues is blocked or clogged inner ears. That also might be something worthwhile looking into. Sinusitis can cause this pretty commonly.
     
  13. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Thank you to everyone for your considerable input and help. It's really informed me, and hopefully other people too in the same situation. In the UK you can't unfortunately get access to the other scans mentioned (MRA, SPECT etc), but I can always dream. ;)

    It's amazing how informed people are as patients, perhaps more informed than the general physicians we often sent to, instead of specialists interested in complex neuro immune disorders.

    There's nothing like personal experience to increase our own knowledge, that can in turn be shared with others.

    Many thanks.
     
  14. Countrygirl

    Countrygirl Senior Member

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    I paid to have a MRI after my first stroke-like attack, but I wasn't allowed to see a report or to have a copy of the scan. I was told there was nothing alarming and I was just diagnosed with vestibular damage. After the second stroke-like attack I had a CAT scan, and I was told it revealed hyperintense foci through the basal ganglia and across the falx. They said they didn't know what it meant and so I am no wiser.
     
  15. dan062

    dan062 Senior Member

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    I'd second the recommendation for an MRA if you have any symptoms that could be attributable to a neuro-vasculitis (although don't worry. From what I've read it's extremely rare).
    You could also wait a year and and have the scan again to see if anything has changed. If your symptoms are suggestive of early MS (I'm guessing as this is probably the most common reason brain MRIs are ordered) it could take years before any lesions become big enough to be seen on the scan and there'd be no point re-scanning in, say, a few months. Alternatively, have the scan re-done using a different protocol and perhaps interpreted by a neurologist with a special interest in whatever condition you're most concerned about (you didn't mention if the scan was done with or without contrast, for example).
    I had a normal brain MRI one year ago. I'm in two minds whether to pursue any of the options above. I think in all likelihood I'll get the scan re-done in six months to see if anything has changed.
    Also, I'm not sure how you're funding your workup, but it might be better to accept the negative as a negative for the moment, and put your financial resources in to other scans / consults, etc.
     
    Scarecrow likes this.
  16. maryb

    maryb iherb code TAK122

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    Some info here on band 41kda Igenex - If it were me I'd start some herbal/abx treatment myself. Find out as much as possible yourself if you can't afford to go to see someone privately.

    "Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection.
    The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test. IgeneX considers it specific, it is marked with a double asterisk. I have reviewed the literature."
    So even though the 41 band reacts to a flagellum protein of Borrelia, the Lyme spirochete, it also can react with a certain number of other spirochetes. I guess that is why Igenex can't put a positive result on a test that shows + for band 41. I guess that further testing is required to narrow it down to the Borrelia spirochete (vs. leptospirosis, rat bite fever and relapsing fever).
     
  17. justtryingtohelp

    justtryingtohelp

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    Have you or any of your doctors also considered Wernicke-Korsakoff syndrome? I am by no means an expert but it seems to match a lot of the symptoms you have described here and on lymeneteurope.org. Just a thought.

    http://en.wikipedia.org/wiki/Wernicke–Korsakoff_syndrome?oldformat=true
     
  18. duncan

    duncan Senior Member

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    Ah, let me guess: An IDSA fan?

    I don't drink. You are going to have to do better than that. My symptoms match late stage NB - right down to all the positive Lyme diagnostics.

    I see you are brand new here. What happened? Couldn't handle LNE?

    If you couldn't make the grade at LNE, what ever made you imagine you could handle this Forum?
     
  19. Thinktank

    Thinktank Senior Member

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    I had a 15-minutes MRI scan done without contrast fluid approx. 1 year ago and it was "normal". The study was performed poorly because the neurologist didn't believe anything was wrong with me even before the scan was done. Instead that incompetent cow refered me to a psychiatrist to rule out ADD, "anxiety syndrome" and other psychobabble. Ofcourse i never went.

    I have lyme disease with some pretty bad neurocognitive inflammation. My LLMD tells me it will improve but i need more answers.
    Next month i'm going to visit a private hospital to have a new, comprehensive MRI study done with contrast fluid, possibly followed by a fMRI.
    Almost all organs lid up like a christmass tree on various CPET, CT and MRI w. contrast fluid scans and i'm sure my brain will as well.

    Edit: Before i go in i need to create a plan for the study to show the neurologist. Any tips or links to resources on how to do a comprehensive brain and spine MRI study for someone with neuroborreliosis will be highly appreciated.
     
  20. duncan

    duncan Senior Member

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    Thinktank, I have been advised by an excellent LLMD that when planning to have an MRI, you must be comfortable with the expertise of both the facility and the individual interpreting the MRI results.

    This appears to hold some validity, at least from my experience. Before seeking the council of that LLMD, I went to a hospital to have an MRI done to look for signs of MS and Alzheimer's. That team found many significant abnormalities in my MRI results.

    I returned just a few months later to the exact same hospital for another MRI, with a possible diagnosis of NueroBorreliosis, at the directions of an IDSA supporter who did not believe Lyme could exist post-standard treatment. Same hospital; different team. My MRI report for the IDSA supporter said everything was normal. No abnormalities.

    So. Moral to that story is make sure your LLMD supports this facility and trusts it and whoever will be responsible for interpreting the results..
     

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