ME help

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MRI was done and  gp said MS , neurologist said looks like MS ,admitted to hospital and LP was negative sent to see Neuroimmunologist to see if it's MS or HE. ,second neuro  diagnosed ME .im not convinced ,why did two say ms and he said ME ? .

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  • Posted

    Gosh what a awful position to be in.

    i think I would go to the GP and ask what is going on?!  That you can't live like this n that you need a definite answer one way or the other.

    Hang in there, x

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  • Posted

    It's my understanding is its a fine line. When I had my MRI they told me in order to have MS the market is to much either grey matter or white matter, I get that confused. I had to much to of the one it was but not enough to call it MS. So they told me it's not MS. I think when you get a doc that doesn't believe in ME/CFS, they'll call it MS. That's just my opinion and experience.

    Not to long ago I was reading one of my journals on CFS and I read that they were studying the brain and they found CFS affects the brain and we do get more grey or white matter. BTW, my MRI was in 1993 and I just read this in the last year. I know several people dx'd was MS but the disease hasn't progressed in 20 yrs. And their not taking any meds for it. I don't know but I'm under the impression that MS can be slowed down but its a progressive disease and over you get worse. I think if it doesn't progress it must be CFS. Again this is my opinion. The symptoms of both illnesses is the same.

    It's hard to know what to do. I was lucky and found a doc that knew CFS and MS and if it was in my mind when I was dx'ed. And that was in 1993. It drives us crazy to not have docs that know what CFS and believe in it.

    Bonnie

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  • Posted

    Thank you for info guys , haziej I have a go appointment and I'm going to pay for another opinion x

    bonni333 I agree there is a fine line and I have got worse , this has been my worst relapse and my legs seem to be the problem. ,other symptoms have died down , I get very tired very quick and leg pain . I just want my

    diagnoses to be 100 per cent right X 

    bunnyhugger i I have researched and symptoms and they are pretty much the same , I've seen 2 neurologist in the last few months -one said MS the other ME .x 

    Bunnyhu

     

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    • Posted

      No, the diagnostic criteria for MS and CFS MAY BE SIMILAR, BUT THEY ARE NOT THE SAME.  LOOK MORE CAREFULLY.
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  • Posted

    Bunnyhugger ,do you have a link I could look at or more info . I've getting very confused too which one I have and want to be on right treatment . Any info as to both would be very much appreciated xxxxxx
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  • Posted

    The national society for multiple sclerosis has a website where specific diagnostic criteria are outlined.  CFS has a diagnosis of exclusion, in other words you only get the diagnosis if everything else is ruled out.  This would include neurological disorders, Lyme disease, hepatitis c, thyroid problems, low iron, low B12.  Typical of CFS is that you feel you can't stand for any period of time.  Also typical is fatigue that can be remedied by a period of resting.  If you need more help, please ask me.  Any competent neurologist should be able to rule out ME.
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  • Posted

    My understanding is that MS involves actual lesions. I am not a doctor of course, but CFS does not involve lesions.  I know this because I have CFS. You need to ask the neurologists exactly what they're basing their differential diagnoses on, in other words, ask them how they think they can tell the difference.  
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  • Posted

    Thank you bunnyhugger 

    I have white spots on the MRI and have been diagnosed with ME/CFS .the confusing bit was before this GP looked at MRI and said MS and so did my neurologist . I am  hypo and hasimotoes .I was sent to QE Birmingham as they thought I may have had HE but neuro said ME diagnoses . I think I would like another opinion to be 100 percent . I want to go back to work but I can't pace myself any more than I already am . Even a bit of house worked knocked me back .How do you cope bunny hugger ?

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  • Posted

    I gave up trying to work.  I realized that continually exhausting myself was delaying any possible recovery.  I put all my effort into getting disability.  I was prepared to sue if I had to but it didn't come to that.  Now I focus all my efforts into trying to get whatever recovery I can, and I find that is a full time job.
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  • Posted

    Bunnyhugger 

    HealthUnlocked

    Mri several small focal areas of high signal in pericallosal and cerebral white matter bilaterally .imflamation eg infection ,demyelination. Lumbar puncture came back negative for protein and organisms . I have had sumptuous for 7 years flair ups of tremors in lower arms ,throbbing lower legs ,ice pick stabbing pain in head itching skin,exhausted ,swollen pale face with very dark eyes ,mood swings.after this flair up which has lasted ongoing 5 months with hospital stay for 7 days .bad lower legs like childblains very painful,tiredness ( exhausted) ,nausea with retching ,facial numbness ,arm numbness,tingling tongue,head pain ,hip pain . Seeing neuro tomorrow .

     

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