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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

25 Replies

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  • zelda94925
    zelda94925

    Posted

    Hi all

    thanks for your replies.

    i haven't any new symptoms, but they think M.E. might not be what I have. It began on one day...and my life changed forever! Pain like no other in my head...thought I was dying. Rushed to a&e and after extensive testing they told me I had M.E. Sensitive eyes, painful eye sockets, memory issues, concentration issues, crawling skin, burning sensation of skin, extreme tiredness constantly, withdrawal from society, severe depression, aches and pains, mobility issues, now using aids and power chairs, the list goes on and on.

  • zelda94925
    zelda94925

    Posted

    Also have IBS, Fibro, carpool tunnel, diabetes t2, Functional disorder, weak eye muscles, painfull foot spazums, an internal lipoma by a major organ....
    • GeorgiaS
      GeorgiaS zelda94925

      Posted

      I also have IBS and diabetes type 2, although I'm underweight and the nurses are coming round to weigh me regularly to see how fast I'm losing it. I weigh less than when I was a skinny 14 year old and I don't know why!

      I've always been thin but this is ridiculous.

    • zelda94925
      zelda94925 GeorgiaS

      Posted

      i was skinny before M.E. Struck!  I need to loose more weight. I've only lost one stone since xmas.
    • GeorgiaS
      GeorgiaS zelda94925

      Posted

      I've been virtually bed bound for over 10 years so you'd think I'd have put on weight but I haven't. because of a healthy diet.

      I know some people who recovered from ME through diet alone. It's well worth spending time on researching the best things to eat, especially if you find out you have Candida.

  • Elmo69
    Elmo69 zelda94925

    Posted

    Hoping you get answers soon! What an awful lot you have been through and are having to put up with!

    The problem with the illnesses you have is they are generally only diagnosed by a process of eliminating all else. Most of those illnesses are now thought to be part of a bigger problem, currently called CFS/ME!

    Sending you my best wishes :-)

    • zelda94925
      zelda94925 Elmo69

      Posted

      Thankyou....I will let you know when I get the results from the MRI's at the end of this month.

      I have a lump that has come up on the side of my eye lid tonight. it first felt very sore like a scratch or burn, and now a few hours later it's formed into a lump under the skin, still feels sore to touch!  There's always something! Never a dull moment!! X

  • Elmo69
    Elmo69 zelda94925

    Posted

    Hi again, just had a couple more thoughts, especially on reading about your binge eating and evening cravings.

    I too have that problem so, like Jackie, I have to try and keep healthy alternatives on hand.

    Depending on your age, perhaps it might be hormonal fluctuations?? Mine definitely worsens a week or so before my period.

    Do you have regular reviews of your diabetes with your gp surgery nurse? Also, have you ever been referred to a dietician?

    Finally, with everything else that you've been diagnosed with, have you been assessed for depression?

    Sounds like you really are not getting much support at all from your gp practice. Try looking online for your local CCG (clinical commissioning group) as that should have a list of all the local services that every gp has access to. Often the gp's themselves are not aware of every service available locally!

    It might also be worth contacting your local citizens advice service too.

    Is there just you and your son at home? How old is he? If you're coping with being a mum too, I really think you need to get some support!

    You are obviously an extremely strong lady and that is a trait of CFS/ME sufferers- coping and keeping on going far longer than anyone ever should. Also I bet you always put everyone else's needs well before you even think of yourself!

    STOP! This is time for you to look after yourself which is not going to be easy and means a complete mind set change for you!

    Sending you my very best wishes and lots of supportive hugs ((x)) ((x)) ((x))

    • zelda94925
      zelda94925 Elmo69

      Posted

      Hi

      thank you for your input. I have severe depression. I have a carer to help with home etc.  I haven't had review of diabetes yet, due blood tests again end of month. Would not give me a monitor to keep check of what foods affect my blood sugar!! Have a diabetic day as well at end of month. Son is 4. Thank you for your kind words. It really is lovely to know you guys have similar issues, I've just shut the doors to the world. I can't cope with crowds of people and only go out for appointments. They sent me to a couple of groups but it was horrid and I didn't return...can't stand being in a group of people that I'm forced into...would rather sit at a cafe with a couple of people....

    • GeorgiaS
      GeorgiaS zelda94925

      Posted

      I think our doctors are more concerned with the results of the blood tests they do. But I think it's a good idea to use a monitor, trouble is the one I bought recently is so complex I can't programme it to make it work correctly!
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