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I have M.E. but now docs think I've been misdiagnosed, what else could it be!??!

Posted , 8 users are following.

zelda94925
zelda94925

Diagnosed with M.E. over five years ago now. But a new doc has sent me for more tests because he thinks I've been mis diagnosed!!! What else could it be if not M.E.? Has anyone else found themselves in this situation?

0 likes, 25 replies

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  • jackie00198
    jackie00198 zelda94925

    Posted

    I guess the question is, what are your symptoms? It's impossible to say what else you could have without more information.
    • zelda94925
      zelda94925 jackie00198

      Posted

      Thank you for your message, I don't have any new symptoms as such, just ongoing really. Have listed some further down thread. Xx
  • Elmo69
    Elmo69 zelda94925

    Posted

    Hi Zelda,

    As you say it's a new doc who has decided you've been misdiagnosed I wouldn't worry too much. How "new" a new doc is he? ie fairly newly qualified, a stand-in ((locum) at the practice?? Assume you're in uk and talking about at your gp surgery??!

    If you're having new symptoms is that why he's investigating?

    Otherwise, having more tests is not necessarily a bad thing. Never forget that you may have other underlying problems such as thyroid disorder or sle which might not have been screened for initially.

    If ever you are unsure , ask the doctor what he is thinking as you have the right to know! If you've been given a request form for a blood test, what does it say on the form as to actual bloods requested and in the "clinical reasons" section??

    Please try not to worry to much (not easy I know)!

    Hope all goes well! :-)

    • zelda94925
      zelda94925 Elmo69

      Posted

      hi, yes in the UK. Thank you for your message. They have sent me for an mri of my brain and full spine...just waiting on results of there findings if any! They haven't given an indication of what they might be looking for, all I know is that they don't think it's M.E. ......
    • GeorgiaS
      GeorgiaS zelda94925

      Posted

      I'm with Elmo; they should be clear about what they're thinking. I would press them for the information. After all it's your body and your life! 

      Doctors can be awful for being enigmatic. Got to drag it out of them. The one I have now's not like that though, thankfully. razz

    • zelda94925
      zelda94925 GeorgiaS

      Posted

      yes I will be asking lots of questions at end of month when they have results!!
    • GeorgiaS
      GeorgiaS zelda94925

      Posted

      But you need to know what they're thinking now don't you?
  • dawn94288
    dawn94288 zelda94925

    Posted

    Are your labs showing something that leads them towards a different diagnosis?

     

    • zelda94925
      zelda94925 dawn94288

      Posted

      the doc says that not all symptoms fit the diagnosis of M.E.....
  • bb62633
    bb62633 zelda94925

    Posted

    My daughter was diagnosed with ME and IBS two and a half years ago. She had tests done last week and it turns out that she actually has Crohn's disease! Doctors had ignored her symptoms for so long because her blood tests were always normal. The gastroenterologist said that it can be difficult to diagnose as first because symptoms can be so vague. I bet this is the same for other illnesses in the beginning.

    ​Hope you get some answers x

    • GeorgiaS
      GeorgiaS bb62633

      Posted

      That happened to the lady who used to run the local ME group. Turned our both her and her daughter have Crohn's disease after thinking they had ME. They're both better now through diet.
    • zelda94925
      zelda94925 GeorgiaS

      Posted

      My diet is probably another issue! For some reason, on evenings I have been binge eating, I think trying to get a sugar fix, but because I haven't any sugary snacks I've been eating cereal with sugar or toast with jam. I know I'm not supposed to eat anything like this but I cannot stop. It's very hard to explain. I've never had a problem with over eating before. It's always on the evenings I have this problem. I think it may be loneliness?  I asked for help on this over two years ago but never got any! Now it's become a really bad habit. Gggrrrrr. The only way I escape it is to go to bed real early! And I don't always go to bed early so just an ongoing horrible round about that I can't get off.......
    • jackie00198
      jackie00198 zelda94925

      Posted

      I struggle with this, as well. The only thing that works for me is, first, not having any junk food in the house. And second, having healthy items on hand so when I get those cravings, I reach for a bunch of grapes instead of a bunch of cookies (biscuits).
    • zelda94925
      zelda94925 jackie00198

      Posted

      Ive tried this, and have a much healthier fridge than I used too, but after eating a banana or Apple I still have the craving so eat my sons weetabix with sugar or have toast with natural jam...I need a trigger to stop me doing this! I'm not hungry...I just can't stop it!! Thankyou for sharing, I feel so alone with this issue!!
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