The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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MRI shows no signs of MS, but...

Discussion in 'General ME/CFS Discussion' started by nettle_tea, Nov 3, 2017.

  1. nettle_tea

    nettle_tea

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    I'm still worried that the recent nerve function tests and MRI may have missed something.

    About three months ago, I had a flare-up of whole-body muscle pain that lasted a couple of days (not a new symptom, but more severe), followed by a week of leg weakness and tingling, plus periodic electric-shock-type feelings all up and down my leg, and muscle spasms/tightness in my calves. I had another, similar flare-up a couple of weeks later, and this time the tingling was more pronounced - a general tickling sensation all through my legs up to my hip, and more distinct pins and needles in both feet. The weakness and tingling continued, at a lower intensity, for the next few weeks, and I'm only now starting to feel back to baseline.

    I had to start walking with a cane, and often wasn't able to get into work (or even leave my apartment) because the weakness affected my mobility so badly. It felt like my lower body was made of half-cooked noodles, and someone had turned on an electric current in the cooking water. Or sometimes, like someone had replaced my feet with tightly-packed bags of wool.

    My doctor sent me to a rheumatologist during the first flare-up. Both doctors I talked to suspected CFS/fibro (making them the second set of doctors to bring it up). They ordered and EMG, which came back normal. Later, my primary care doctor ordered MRIs of my brain and spine. The only weird things that showed up were 1) a small, benign brain tumor in my 4th ventricle that needs to be monitored, but is not causing any symptoms, and 2) a possible area of inflammation on the right side of my sacrum, which will require more MRIs, but, she thinks, is unlikely to explain bilateral symptoms.

    I know that both fibro and ME/CFS can cause tingling and muscle weakness, but I am worried about a possible misdiagnosis. This feels like a problem that is specific to my legs/feet, and it occurs independent of my level of fatigue/malaise. It also doesn't seem connected to activity levels.

    My questions: is there any point in continuing to explore the possibility of MS, myasthenia gravis, or another nerve-related disease when the initial tests are showing up clear? Does it sound like something other than (or in addition to) ME/CFS could be going on?
     
    merylg likes this.
  2. Kati

    Kati Patient in training

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    Hi @nettle_tea, i am so very sorry you are going throuh this. You do not mention in your post whether you have been seen by a neurologist specializing in MS as it sounds like your GP ordered the imaging.

    It would be worthwile in my mind that you get referred in neurology or even simply talking to your local MS Association to see whether they could have further insight for you?

    P.S: i am not diagnosing you with anything. I simply wish you had better answers!

    I remember attending a health fair, we had a booth for ME. Nearby there was a booth for MS. One guy from the MS community came over and asked us what was the difference between the ME and MS fatigue? That left me speechless for various reasons. The MS patients have overlap in symptoms with us ME patients and not often it is discussed.

    In my views, tingling and numbness in a specific area of your body and associated muscle weakness deserves further attention. I disagree this is ME doing this.
     
    merylg likes this.
  3. duncan

    duncan Senior Member

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    I suppose that depends on what you may have been tested for. What diseases have the reputation to approximate MS? You may wish to ask whether you have been adequately tested for those.

    I would assume this was part of the differential diagnosis process your doctor(s) embraced, though.
     
  4. Ravn

    Ravn Senior Member

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    @nettle_tea There definitely is a point in continuing to explore other possibilities, MS and others, there's so many oddball conditions that can create havoc with nerves. A cousin of mine went from ME via several alternative diagnoses to finally end up with body-inclusion syndrome (absolutely not saying that that's what you have, just to illustrate that misdiagnosis does happen).
    Like @Kati I think a neurologist should be part of your team (just try to get one that doesn't think ME is a "conversion disorder" if you can). I would have thought your possible brain tumor would have seen you referred to one already. And while it's correct that ME can cause tingling, numbness and weakness, the level of weakness you describe would be unusual at least.
    Hope you get to the bottom of this soon.
     
  5. viggster

    viggster Senior Member

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    Small fiber neuropathy can cause some of the problems you're describing. There's a test from a lab called Therapath that will show it. My doctor ordered the test - it's two small (3 millimeter by 1 millimeter deep) skin biopsies. This condition is common in ME/CFS - the small nerve endings near the surface disappear. Dr. Kaufman thinks it's autoimmune but I don't know how much evidence there is for that.
     
    merylg and TrixieStix like this.
  6. TrixieStix

    TrixieStix Senior Member

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    @nettle_tea was the MRI done with contrast? In April of 2016 I had a one month episode of symptoms much like your describing and I too was evaluated for MS and it was ultimately ruled out. I underwent MRI of spine and brain with contrast done to MS protocol. I had EMG and NCS testing and visual evoked potentials testing (I was having visual symptoms as well) and all those tests were normal.

    However I saw the neurologist again last month and requested I be tested for Small Fiber Neuropathy (done in office using skin punch biopsy) and my test results have come back showing that I have significant Small Fiber Neuropathy. There are various conditions known to cause Small Fiber Neuropathy (diabetes, sjogren's syndrome, etc) so if you were to have Small Fiber Neuropathy doctors would want to test for things known to cause it. Unfortuately a cause for it is not found in of people with it and this is called "idiopathic small fiber neuropathy".

    Also if you haven't read about Sjogren's Syndrome I recommend you do and see if it sounds familiar to you at all as it can cause very significant neurological symptoms in some with it. This is a great article by a doctor outlining the possible neurological manifestations of Sjogren's.
    http://www.sjogrensworld.org/mandel.htm
     
  7. TakMak

    TakMak Coughs and sneezles spread diseasels

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    Cumbria, UK
    This reminds me of what I am experiencing and have done for the past three years. It started with the faintest of pins and needles in both feet lasting for a few weeks. After it abated I was then left with odd pain, almost cramp like, in my feet. It re-occurred several weeks later, but this time went further up my legs. Again, after it passed I had pain in the same places that the tingling had been. My ME symptoms of general malaise and fatigue had also worsened but this seemed to be something different almost riding on top my existing ME, which I've had for 18 years.

    This continued for a while, each time getting worse. I was getting clumsy now and was finding walking oddly difficult, like I had to relearn how to walk every time I got up. When it started in my hands and then later traveled up my left arm and up the left side of my face (but not my right) I went to the GPs. I probably should have gone sooner but my GP has not been that particularly helpful when ME is mentioned. This time though I was passed swiftly onto neurology and had MRI scans of my head and spine to check for MS. By then I was also having very sharp stabs of pain at random places all over my body. But the MRI scan came back with 'nothing remarkable found' and I was even more swiftly pushed out the door and told to 'think positive'.

    So I got myself a different GP and she had me tested for RA. I was mildly positive RF and with slightly elevated ESR but negative on the CRP and ACCP. The rheumatologist told me I had mild fibromyalgia and was told to 'think positive'. Sigh...

    That was nearly a year ago. As I write this I still have the pins and needles in my feet, hands and left side of my face but the short sharp shocks have mostly gone. I still have the pain and my energy levels are probably at an all time low. It doesn't appear to have gotten any worse in the past six months though.

    I did go to my GPs a couple of weeks ago. I asked about getting some more tests done but he didn't see the point. I didn't take it any further although I did give him the MEA's purple book to keep.
     
  8. rodgergrummidge

    rodgergrummidge Senior Member

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    Hi @nettle_tea you have a lot going on with different symptoms and possible co-morbidities, but some things that may lead to some of the symptoms you are experiencing might be:
    1) neuro-autoimmune issues (eg. motor neuron disease, Sjögren’s disease, lupus, vasculitis)
    2) shingles
    3) gout
    4) and of course fibromyalgia

    with multiple overlapping symptoms and pathologies, you really need a top-notch doctor to go through and systematically test for each possibility.

    Rodger
     
  9. Alvin2

    Alvin2 If humans were rational...

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    I'm, only able to skim this thread but OP, if you don't think the tests you have had are good enough then don't be afraid to seek out better specialists. I spent many years going doctor to doctor to get the right diagnoses and it was worth it.
    The biggest thing i should have done earlier on was to not take my time, once i was unsatisfied with one doc i should have seeked out another ASAP instead of doddling
     
  10. nettle_tea

    nettle_tea

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    Thank you so much for the replies, everyone!

    I just got referred to a neurologist - my appointment is just over a week from now. The only reasons my GP held off so long on referring me was she didn't want me to get too overwhelmed with appointments.

    I learned about the brain tumor over the phone a couple of weeks ago, and haven't seen any doctors since then. I've just been told not to worry too much about the tumor because it's small and shows no signs of current growth. On the other hand, there was some talk of a (non-urgent) referral to a neurosurgeon. So there's a lot on my mind! I want to learn more about this tumor, but I also want to make sure we get to the bottom of my symptoms.

    The neurologist I'm seeing is an MS specialist, so that's good news in terms of my MS-related questions.

    The silver lining around the brain tumor is that I will definitely be getting regular MRIs, so if visible lesions develop, I will know.
     
  11. nettle_tea

    nettle_tea

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    The head/neck MRIs were done with contrast, and the mid/lower spine MRIs were done on a separate day without contrast. I also had an EMG and NCS. I was thinking of asking about whether a lumbar puncture makes sense. Small fiber neuropathy also seems like something to consider!

    I'm really sorry that is happening to you! It sounds like your doctor is being dismissive, too.

    It's true, and I also have significant orthostatic lightheadedness that kicks in when it's hot out. There could be a number of causes for that. It almost seems like I might have a mild case of fibromyalgia on top of another underlying condition, but who knows. Pain barely makes the top 3 of my most bothersome symptoms, although when the full-body pain hits, it does seem to follow typical fibro patterns.

    Thank you! My GP takes me very seriously, so that's wonderful. I had one negative experience with an endocrinologist, but I don't seem to have any underlying endocrine conditions, so that's the end of him. I hope the neurologist takes me seriously! Being transgender and having a history of mental health issues makes finding good doctors complicated - there are so many ways they could be rude or dismissive - but I'm lucky to have excellent options here in Boston.
     
    ScottTriGuy, TakMak and Alvin2 like this.
  12. Alvin2

    Alvin2 If humans were rational...

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    Your welcome, and glad to hear you have many options, that can make a huge difference which i know from personal experience.
    Sometimes i have been known to be selective in what i tell a doc on first meeting, because sometimes they latch onto something and won't let it go no matter how untenable.
     
  13. nettle_tea

    nettle_tea

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    I just got back from a disappointing neurologist visit. She suspects fibromyalgia, and doesn't think it's worth considering any other possibilities. She shut down the idea that any of my tests could have been false negatives. She also didn't want to talk much about the brain tumor, except to say, "we don't operate on these" (edit: the implication being that it is not serious enough to warrant surgery). I went in with a list of questions and only felt comfortable asking two or three, because I felt so shut down. I don't even know what the plan is for monitoring my tumor.

    The neuro was at least able to detect some weakness in my hips.

    I don't think fibro offers a full explanation, since I don't think I'm in nearly enough pain to explain the severity of my weakness or walking difficulties. I'm willing to consider that it might be an atypical presentation, but then again, I'd also like my doctors to consider that I might have an atypical presentation of something else.

    I emailed my GP with all of these concerns, and said if fibro is being pushed as the primary diagnosis (as opposed to a comorbidity), I'd like to see some literature supporting the idea that it can present in this way. And that I'd also like to push, if possible, to find some positive biomarkers for fibro and/or CFS.

    When it's time to follow up with the neuro, I think I'll go with someone else.
     

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