The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Does anyone else have ME and MS????

Discussion in 'General ME/CFS Discussion' started by Vicariousdancing, Nov 10, 2014.

  1. Vicariousdancing

    Vicariousdancing

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    I am sitting in the hospital right now newly diagnosed with MS. I've had ME 12 years. 2 years ago my MRIs were clear and now they are not.

    I know some ME patients have lesions. My doctors here are not ME literate. Has anyone else been diagnosed with MS? or misdiagnosed? how do you tell an MS patient from an ME patient with lesions.
     
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  2. alex3619

    alex3619 Senior Member

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    This is a confusing area. Usually what happens is you have ME until you fit the criteria for MS. However many MS patients get rediagnosed with ME, and vice versa. The two are very similar in many respects. There might even be a case made for ME and MS being the same disease but at different ends of a spectrum. Some of the weird biochemistry in ME is only found in a few other diseases like MS, e.g. elevated short form RNaseL.
     
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  3. justy

    justy Donate Advocate Demonstrate

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    I have seen many people on MS forums who have been misdiagnosed with ME for years before getting an MS diagnosis. I think tests results and our bodies change.

    I myself now have positive autoimmune antibodies after years of them being negative, but having a Lupus like presentation. I am now being further investigated for Lupus. At other times my symptoms have mimicked MS very well - although I have never been offered an MRI.
     
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  4. ukxmrv

    ukxmrv Senior Member

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    Yes, I have known patients who said that they had both ME and MS. They differences?

    1. An acute onset of a viral illness that left them different than before with new specific symptoms
    2. PEM after trivial exercise
    3. New infections and repeated viral attacks (new things like repeat sinus infections, tonsillitis, pneumonia etc)
     
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I am sorry to hear that you are in this situation.

    I think it is generally agreed that there is no single disease called ME. ME is the term used for all those diseases A,B,C,D,E, ... that can cause roughly the symptom pattern of 'CFS' and which for any particular person have not yet proven to be a known disease like X,Y, Z ...

    If we assume that your current doctors are reading the MRI correctly then it will show areas of demyelination. People with ME may have abnormal patches on their MRI scans and anything abnormal is a 'lesion' but areas of demyelination are usually reasonably easy to distinguish (not always). If you have areas of demyelination then that is probably clear evidence of MS.

    The question then is whether your previous ME was due to small episodes of demyelination that did not show up on previous scans. If the symptoms of ME depend on the brain stem and hypothalamus then a very tiny lesion might I guess produce ME symptoms and not be visible. Then your previous ME (X) would have proven to be a known disease (A). On the other hand statistically we would expect a few people to get an ME type disease that is not MS and then get MS later quite by chance.

    I doubt that you can tell the difference by looking for special features of ME, because these are so variable from person to person and MS might be able to mimic any of them. On the other hand, if your previous ME in fact has tell tale features of MS then it probably was MS all along. The telltale features of the common relapsing remmitting form of MS are separate episodes, each with different sorts of symptoms, which tend to improve partially over time. By different I mean that one time you might have tingling in the leg and another time blurring of vision. You do not get the same pattern of symptoms cropping up time and again. Each episode is something new and either fades away or just stays there.

    So maybe the question is whether you have neurological symptoms in a particular place now and did you have neurological symptoms in other different specific places over a period of time in the past.
     
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  6. xchocoholic

    xchocoholic Senior Member

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    I've had me/cfs with brain lesions since 1990 but the lesions vanished in 2007 ? after eliminating my food intolerances, esp gluten in 2005.

    You may want to check out Dr Terry Wahls. She's recovering from ms.

    I still have my me/cfs dx because I have pem and oi. Although I wouldn't be surprised if this gets changed to celiac with multiple autoimmune diseases someday.

    Tc .. x
     
  7. justy

    justy Donate Advocate Demonstrate

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    I think this is common in M.E as well? if I am reading what you say correctly. I have these different sorts of symptoms that improve partially over time, never to come back - eg the severe right sided eye pain that plagued me for some months 3 years ago. I also have new symptoms which come and then either stay or just gradually go away.
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    They would need to be definitely neurological symptoms, which eye pain is not likely to be. I agree that you might get different things cropping up in other X,Y,Z ME diseases but I doubt it would be that similar to MS. And maybe your B type of ME will turn out to be a known Y disease too, Justy! (Sorry I got the letters a bit round the wrong way in the first post.)
     
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  9. Marco

    Marco Grrrrrrr!

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    That's a very useful distinction and I hate to divert the thread but would a sporadic but repeating apparently neurological symptom suggest anything in particular?
     
  10. Strawberry

    Strawberry Senior Member

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    Curiosity got the best of me on eye pain as MS was suspected last year for me. I found this on WebMD (if it is not reliable, sorry) for symptoms of RRMS:

    http://www.webmd.com/multiple-sclerosis/guide/relapsing-remitting-multiple-sclerosis

    And FWIW, I have had basically all symptoms at one time or another.
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    You are right that optic neuritis can be painful but the loss of vision that goes with it tends to overshadow that. It is always the detail of the story that counts - and I guess the way Justy told it didn't sound like optic neuritis at all.
     
  12. Strawberry

    Strawberry Senior Member

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    Thank you! and optic neuritis can be easily detected in a normal ophthalmology visit?
     
  13. Scarecrow

    Scarecrow Revolting Peasant

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    Oh, help. Who let that cat in with the pigeons?

    Well, that is an eye opener!

    I always imagined that in MS, one symptom would start, may remit but would then occur again and perhaps something else would happen, and then something else and that all would relapse and remit but would tend to get gradually worse over time.

    It's therefore surprising to me that I've followed the pattern you describe but fortunately no symptoms have been too frightening and I suppose that in itself is telling.

    Marco, I have a very clumsy left hand that does exactly this and the general trend is not good.

    Further, and totally off topic ME sore throat doesn't seem at all typical of MS, nor does PEM or that malaisey type of muscle fatigability. We are complex creatures.


    @Vicariousdancing best wishes to you and I hope you get all the support you need.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    These days an ophthalmology visit is likely always to include slit lamp examination. I am not an expert but optic neuritis has a very specific and I think usually fairly evident appearance on slit lamp examination.
     
  15. liquid sky

    liquid sky Senior Member

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    ME lesions are different than MS lesions in that they are smaller (punctate lesions) and are not placed in the same pattern in the brain. Also, MS lesions tend to change, clearing up, getting smaller, new ones developing. When new lesions develop, there are usually very obvious neurological symptoms, often sudden and devastating.

    Taking another MRI in a few months/year should show the difference. If the lesions are small and remain fixed, it is unlikely to be MS. Have you had a lumbar puncture? It is needed to make a diagnosis of MS. Sorry you are facing this scary disease. I wish you the best.
     
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  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Just wanted to add my best wishes. I hope you find a kind doctor and figure everything out.

    Hugs.
     

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