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discussion on a forum RE ME misdiagnosis

Discussion in 'General ME/CFS Discussion' started by pollycbr125, Feb 6, 2013.

  1. pollycbr125

    pollycbr125 Senior Member

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    justy and Allyson like this.
  2. Esther12

    Esther12 Senior Member

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    I've met lots of people like that. Almost all of them were pleased to find out they have some life-long incurable condition, rather than having to deal with the way CFS patients get treated. It's a worrying group of people to get sympathy from! ('Don't feel bad for me... I'm definitely going to get better. I was reassured... told how effective CBT and GET are...')
     
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  3. Allyson

    Allyson *****

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    I phoned the genetics dept at Royal melbourne hospital ( australia) and they have a connective tissue disorder section that covers EDS and other CTDs
    it is free
    you need a GP referral
    RMH is one of Australia's best hospitals for medical research IMHO
    they sounded very nice and approachable
    I will post updates
     
  4. Allyson

    Allyson *****

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  5. Shell

    Shell Senior Member

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    Lupus is one of those things I think I should have been tested for. I never have been. I s'pose I should look at what tests need to be done. I think in the UK you almost HAVE to have the even-a-doctor-can't-miss-it butterfly rash. I do get a rash and flushing (MCA??) I've never been tested for anything to do with collegen even though my BP is very unstable - up an down all over the place.
    I have a relapsing remitting type of disease, which is gradually getting worse. Don't know if Lupus does that.
     
  6. justy

    justy Senior Member

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    Hi Shell - yes Lupus can be realpsing and remitting - in Lupus they call it a 'flare'. Only about 30-40% of Lupus patients have the rash - i get flushing and a funny red spot rash mildly across my cheeks and nose - i never had this before my relapse 4 years ago.
    I am currently being tested by my doc for lupus - but my ANA came back normal and my RF test as well. My doc is concerned though because i am now failing some normal blood work - which is not specific to anything, but makes him supsicious. He (my NHS GP) says that CTD'S are a large spectrum and some people never get a specific diagnosis - he feels that M.E may well come under this umbrella, and perhaps be autoimmune in nature. He has reffered me to a rheumy - but i dont expect much from a local NHS rheumy. If the rheumy is unsure i may pay to see Dr Hughes at the London Bridge Hospital (£300 for appt and work up, 2-3 month wait)
    I am only suspicious because i have lung problems (fibrosis after repeated infections, pneumonia and pleurisy) i also fit many of the other symptoms - but my kidney have always been fine.
    My ESR has been raised slightly recently but my CRP is low (Dr Hughes says this is common in Lupus) Have you seen his alternative criteria?
    http://www.lupus-support.org.uk/Crit.htm

    Extremely enlightening reading - i meet many of those criteria - a real aha moment when i first read it.
    All the best, Justy.
     
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  7. Shell

    Shell Senior Member

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    Thanks justy. that's a fascinating bit of info. I tick quite a few of those criterea boxes too. At the moment the major issues for me are my heart and lungs are crap and I'm going through another batch of shocking migraines. If some time in the looooong slooooow process of the NHS I find I have Lupus and my lungs are knackered because they didn't find out fast enough, I'll be in the news. "Woman In Wheelchair and Overly Bright Cardigan, Goes on a Rampage!"
    Well, I suppose I'd have to find the energy to do that....:rolleyes:
     
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  8. Valentijn

    Valentijn Activity Level: 3

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    That's what mobility scooters are for :D I recommend using a lance with it.
     
  9. Xandoff

    Xandoff Michael

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    Hi Justy,

    As a male I had more than my share of growing pains. My Mother had medicine induced Lupus in her 60's, one Sister had Chrohn's and my other sister had 4th stage Lymphoma at twenty and lived till 54. I have always wondered about Lupus or Sjorgens as a part of my pain. I was alo double jointed. I live in the world of what some call subset 8 of ME CFS. I have a lot of pain plus.
     
  10. justy

    justy Senior Member

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    Hi Xandoff - the double jointed thing could point to a connective tissue disorder (like lupus etc) Also your family history makes this or autoimmune likely - i think we will find M.E fitting in with this area over the next few years. I have two children with some hypermobile joints - i am not hypermobile except in my toes!-all with 'growing pains' i had them terribly as a child. I had read that growing pains are not, contrary to popular belief, a normal part of growing up - your bones and tendons don't grow that fast that it should hurt. the Rheumy who said this (sorry cant find link) said growing pains are always a red flag - tell that to my local surgery - they keep telling my 12 year old son his ankels are just weak and need building up with exercises - yet he is in agony for hours if he plays sport.
    Two of my children had Oshgood schlatters (sp?) but i dont think this is realted to CTD's.
    All the best. Justy.
     
  11. Shell

    Shell Senior Member

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    The growing pains thing is a new one. I was told it's "normal" so when my second son had them I put it down to "normal" part of growing for him. He would literally grow an inch overnight sometimes (he's 6' 3" now)
    I always guessed that having a son (oldest) with type 1 diabetes that this was related to how ill I am/ There's no autoimmune probs on my husband's side but we had an elderly cousin with MS on my side.
    I've had three miscarriages since I became ill.

    Is Lupus related to EDS in some way as a connective tissue disorder?

    I have wondered about some form of EDS as my BP is so unstable, and I always had the 'translucent skin' sign. My sister used to use it as an insult.lol. "You're transparent you are!" she used to bellow at me.lol.
    My nearly 10 year old has the most pale translucent skin I've ever seen and has high tone in his legs causing him to toe walk.
    The fact that three of my children have health problems does scare me - and then I look at the three that seem fine and wonder what's in store for them. God forbid they get this from me!

    I'm rambling...I'll shut up now.
     
  12. peggy-sue

    peggy-sue

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    I did manage to get tested for lupus (after I showed up, with a butterfly rash on my face and demanded a test.)
    I was told it was negative.

    but Shell - you're not the only person who wears overly bright cardigans!
    I'm a cardigan addict. I have worn cardigans all my life, I have never, ever thought they are anything other than wonderfulI. I love great big bright muliticoloured ones with pockets!

    Cardie-lovers of the world unite! :hug:
     
  13. Shell

    Shell Senior Member

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    LOL Peggy-sue indeed cardie-lovers of the world unite. My particularly bright one was given to me by my very son to be daugher in law (2 weeks to the wedding). Alex (my son) said "Don't give that to mum! She'll wear it!" Heheh He was so right!

    On the test, or should that be tests for Lupus, or anything else marginally more complicated than a blood HB, I wouldn't trust the labs or doctors as far as I could spit. In fact I've recently seen a very sick man (friend's dad) where they couldn't even get his HB levels right.
    I wish they would listen carefully and take a full history and work from there. The over-relaince on over worked labs and machines that staff aren't properly trained to use anyway, is scary.
     
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  14. peggy-sue

    peggy-sue

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    :redface: I get that too!
    "that" being... ""Don't give that to Sue! She'll wear it!" :balloons: And I do too!

    My very earliest cardie was originally a plain olive green cashmere - with beautifully tailored collar and lapels.. How I loved it! It sort of became multicoloured as I repaired and patched it more and more; the sleeves became three-quarter, then elbow length - with purple suede cuffs. Eventually there was more repair than cardie.

    Oh and I know about "test" results too. When it finally came to getting the very basic tests done, I did tell my gp that I needed a haematocrit to be included. He gave me back a total haemoglobin result on the print out.
    He had the cheek to tell me that a haematocrit and a total haemoglobin were the same things!

    Given I've performed both haematocrits and total haemoglobins in labs, I'm well aware they are totally different tests with totally different meanings..
    :devil: I wonder if he'd tell somebody with sickle cell anaemia that a haematocrit and total haemoglobin are "the same things" - or try giving one of them a total haemoglobin instead of a haematocrit!

    However, it did make me wonder if he was just scared it would show something weird.
     
  15. Valentijn

    Valentijn Activity Level: 3

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    My fiance, at age 39, came down with type I (autoimmune) diabetes one year after I came down with moderate-severe ME. Maybe different reactions to a shared infection or other trigger? Though after a few months, his natural insulin was able to keep up with his glucose, unless he has too many sweets or gets a virus. Still has the autoimmune antibodies though.
     
  16. Shell

    Shell Senior Member

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    peggy-sue What scares me is that your GP may actually have believed that to be true. As a nurse I worked with some doctors whose knowledge base was so rocky it frightened me. There are some shocklingly ignorant and dangerous medics out there. One in particular I remember nearly killed one of my patients out of sheer stupidity and was a consultant within a couple of years. Scary!

    Valentijn - It is interesting to me that type 1 diabetes is on a massive increase. Back in the olden days when I was a nurse type 1 was called juvenile diabetes because nearly everyone who had it was dx as a child. I don't remember nursing any insulin dependant diabetics who hadn't been so all their lives.
    My son became ill nearly 4 years ago aged 19. Although I was beginning to suspect he had diabetes I was thrown because he was too old for type 1 and too young and thin for type 2. When I did a bit of research and saw that more and more adults are getting type 1. Autoimmune disease is rocketing up across the northern western end of the world and there are odd spikes in Australia. I wonder when there'll be a concerted effort to find out why.

    Even ME was sporadic until the 1980s wasn't it??
     
  17. Valentijn

    Valentijn Activity Level: 3

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    Fortunately our doctor checked it right away (and just based on sleeping a lot lately and a dry mouth!), because his levels were literally off the charts. But yeah, it sounds like a lot of docs discount the possibility of type I, and some won't even test for it with adults, assuming it's from being overweight.

    But from what I've read, there's a much higher incidence of type I following a certain virus (don't remember which), and a somewhat higher incidence of type II following the same virus. Also, we met a volunteer at the hospital once had type II diabetes, but had always been very fit and of normal weight.

    I think most of the "must be true" knowledge about both type I and type II diabetes is very questionable.
     

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