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Question your ME/CFS diagnosis any medical persons please read

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by pollycbr125, Jun 7, 2013.

  1. pollycbr125

    pollycbr125 Senior Member

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    I am posting this thread as I have a new diagnosis the following post is from a post I posted in the private section of the forum but I really think non members need to be aware and any medical professionals who may be watching the forum . I knew I was misdiagnosed and I basically had to become a medical detective in order to diagnose myself which has now been verified by the top expert in the country . Coincidentally on one of the facebook forums I am on someones daughter has also been diagnosed with ehlers danlos syndrome and POTS the same as me after being severley ill with what they beleieved to be ME for several years . coincidence ? or are many people labelled with ME not getting diagnosed correctly in the first place ? ...................

    Hi everyone not been around much so apologies for that my health is really pants at the mo but wanted to share my good news I have a new diagnosis so nice to be proved right after all these years though it has taken me years of research in order to be able to diagnose myself .

    I went to see the top proffessor in the country no more pissing about on the NHS and yes I have ehlers danlos syndrome type 3 and he also suspects I have POTS too which came as a bit of a shock as id sort of tried testing myself at home for that and had ruled it out as I didnt think the gap between readings was high enough though that was some time ago so that diagnosis needs verifying but with the symptoms I have and the deterioration in my health I think its probably right .

    what the future holds now I have no idea my health really has gone down the pan however the feeling of vindication is rather nice wish I could bottle it actually [​IMG]

    both ehlers danlos syndrome and Pots are both not very well known conditions so I may well be starting an even bigger battle who knows .

    I don't think there are any services for either close to me so it looks like I will have to travel . There was a suggestion that I went into hospital in London for 3 weeks btbh going down for just the day has nearly killed me and I don't think I could bare to be away from my kids or the dogs for 3 weeks ive never been away from them that long theyve been away for a week at a time on holiday with there dad but 3 weeks thats a long time . Im also going to become a grandma in roughly 2 weeks time not that im gonna be the grandma that i imagined id be making sandcastles on the beach or flying kites on the hills but I still want to be able to spend time with her .

    So im a bit in no mans land at the mo , also sad my Mum never got to know what was wrong with me . My sister went with me he thinks she also has ehlers danlos syndrome so she is going to get checked out properly too .

    My Gp is in for a shcok but hopefully they will start taking me seriously now . Apparently I need a lot of tests so they probably wont be happy at that but I dont think they will deny me not after all the crap ive been through . we shall see and cross that bridge when we get to it .

    I am so glad I am a stubborn sod had I not been I would have just accepted the ME diagnosis until I eventually rotted away . The ME clinic in Leeds told me unles I accepted the diagnosis I would never get better so glad I follwed my gut and not theyre bloody advice . The ME diagnosis has done me so much damage had I been accuratley diagnosed all those years ago I may never have deteriorated to the level I have .

    I expect the report from the professor to be through in a couple of weeks ive made an appointment with my GP for next Thursday the moment I tell him will be like on that visa card advert PRICELESS [​IMG]
  2. PhoenixDown

    PhoenixDown Senior Member

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    How much hypermobility do your joints have? How were you diagnosed with POTS?

    Can you PM me, which specialist did you see?
    merylg and Allyson like this.
  3. Allyson

    Allyson Senior Member

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    Hi Phoenix DOwn - I am
    Hi PhoenixDown,

    I am told you do NOT need to be hypermobile at all to have EDS - that is a common misconception. EDS affects ever one differently - even in the same family.
    THere are many ohter symptoms including OI POTs and family history counts for a lot in Dx.
    There is a list of many symptoms here
    http://forum.notcrazy.net/index.php?topic=9571.0
    There is still a lot of research to e done into it as, like M E, it has been neglected and under-diagnosed for decades or more.


    A


    A
    merylg likes this.
  4. Allyson

    Allyson Senior Member

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    Hey Polly you may wasnt to see if you can get you plasma volme tested too.
    I had min measure and was 700 mls short of the full 5 litres or so we are supposed to have.
    The test is called ared cell mass or a Plasma VOlume test and can be done ina major hopital with a Nuclear Medicine Department.

    I was concerned about the incresased risk of embolis this situation may lead to and am still looin ginto treatment options for it now. ut it explains a lot about my condition.


    Best,
    Ally
    merylg likes this.
  5. Esther12

    Esther12 Senior Member

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    Good luck to everyone who has been finding out more information about their health. Always good to hear back from people making some progress in understanding their condition.
    leela, merylg, golden and 1 other person like this.
  6. golden

    golden Senior Member

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    Clear Light
    Yes , many thanks . Very inspiring . Wishing you well.

    :)
    merylg and Allyson like this.
  7. Allyson

    Allyson Senior Member

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    for you Polly, golden, Esther12

    BLOOD VOLUME MEASUREMENT TEST

    have you had your blood volume measured?

    this is important for all of us as it it some positive proof of our illness

    Print it off and take it to your GP and /or or specialist

    I have had this done in Australia at ROYAL Melbourne Hospital

    My blood volume was very low - 4.33 litres intead of 5 litres.

    I drink LOTS of electrolytes every day so they evidently do not fix it

    A MAJOR hospital wil be needed to do this simple non-invasive test - the blood volume test though as it need a nuclear medicine department.

    More info on the test here
    http://my.clevelandclinic.org/heart/services/tests/nuclear/bloodvolumetesting.aspx

    Please share widely!

    This may be the most important test we ever have - in addition to the fatigue and crashes that low blood volume causes there is also an increased risk of embolis...stroke ..heart attack with low blood volume too.
    taniaaust1 and golden like this.
  8. Esther12

    Esther12 Senior Member

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    Thanks Allyson. I do have some blood pressure problems... I'm a bit 'off' medicine at the moment though. Reading CFS medical papers has made me generally want to avoid doctors as much as is possible!
    golden and ukxmrv like this.
  9. Allyson

    Allyson Senior Member

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    H
    Hey yes quite understand that Esther,
    but this is Blood VOLUME - not blood pressure

    Ie it means i do not have enough actual blood in my body.

    SO i am keen to find out why if possible nad how to fix it !

    Also as LOW BLOOD VOLUME is puported to be very common in ME/cfs I would like to know if anyone else has been tested and if they have it also please.

    A
    merylg, taniaaust1 and golden like this.
  10. Esther12

    Esther12 Senior Member

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    Best of luck with it Allyson. Let us know if you find something helpful for yourself.
    merylg and Allyson like this.
  11. Allyson

    Allyson Senior Member

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    thanks inded Esther

    - I am looking into IV therapy as the logical treatment but it seems to help some for up to a fortnight or so , but not others ....
    i will try it and see how i go.
    Also i would love to know the cause!

    at least it is some definite proof... finally!

    cheers

    Ally
    merylg likes this.
  12. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    The same thing happened to me, but you could still have ME as well as EDS, Dr Hyde says they can often go together.
    The people in london NHNN treated me like poo, and it's been two years and still don't have my meds, as the waiting list is so long.
    I wish I was well enough to go back up north to see prof newton, she at least was nice.
    If you want any info about what to expect do let me know. Although if you go private you will get private room and get treated a lot better, but it costs heaps.
    merylg, Allyson, Shell and 1 other person like this.
  13. golden

    golden Senior Member

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    hi allyson ,

    Thanks very much :)

    I was initially very enthusiastic about the test until i found it meant injecting self with bit of radioactivity...

    I am bound to have a bad reaction and dont want to take the chance ...although i did serioysly consider it ...

    I know its only a tad of radioactivity but my protocol rests solely on eliminating toxins really as much as possible - thats all i have got that works for me really ....

    I am very pleased you have proof though - it must be a great feeling :)
    merylg and Allyson like this.
  14. Shell

    Shell Senior Member

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    I'm so pleased for you Polly.
    I'm feeling a bit Guy Fawkes over the whole NHS at the mo.
    Reading Ramsay's Disease about ME and read that those of us with dysautonomia dx would have been excluded from a Ramsay criteria for ME. Frustrating and interesting.
    Also just found out that my Lupus bloods which were neg could have been seriously influenced by the Prednisolone I was taking. I truly and utterly HATE the stupid NHS.
    Did I mention I hate the NHS?
    Good luck with your future treatment Polly. I hope having an accurate dx will be the first step towards some health improvement.
  15. PhoenixDown

    PhoenixDown Senior Member

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    I know, and I appreciate your enthusiasm but the reason I asked is because I wanted to know if she had an official diagnosis without hypermobility, and to find out which specialist she saw. Remember the EDS specialist I saw said I don't have EDS, even if she's wrong like you say, I can't really do much with a self diagnosis of EDS, I still think that I'm in a null territory of diagnosis, a medical no-man's land.
    merylg and Allyson like this.
  16. Allyson

    Allyson Senior Member

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    i have lost where this thread started Phoenix but I have an official Dx of EDS without hypermoblity and i uderstand another doctor who states this is possible is Dr Francomano - a US EDS specialist i think from Baltimore - i have the details somewhere.

    It seem to me reading the many, many POTS /OI /EDS and ME fb pages that all the same symptoms seem to pop up on the various pages- to the extent you can 't tell what page you are on.

    There re POTS people who are wildly hypermobile but have never had an EDS Dx simply because their docs do not know about the connection. And EDS epeople saying why am so tired and dizy and wek etc and not connecting those symtoms with their EDS.

    best

    Ally
    merylg likes this.
  17. Allyson

    Allyson Senior Member

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    that is interesting thanks Shell,

    ad sorry to hear of your trouble withthe NHS - that is sad to hear when wealthy countries do not have adequate health systems.


    I woud have thought dysautonomia and ME were well known to be associated; i wonder if any one with ME sho has benproperly tested for POTS etc has been found not to have it..

    this is reposted wih permission from a fb site from someon who had hd an ME Dx_

    "If you have MECFS it's worth checking the symptoms of EDS... Hi everyone, I'm very new to MECFS and when I joined the various Facebook groups I was prompted to consider EDS. Yesterday I researched many medical articles & sites so I could see which symptoms I shared. Today I went to my GP who admitted he'd never seen anyone with the disease & had only studied it @ med school. He refreshed his knowledge on EDS & then we worked through my symptoms & he said it looks very likely so that's the start of heading in the right direction. I do have hypermobility but didn't realise this until I saw all the photos of other people doing the same funny things with their hands. There are other types of EDS so don't rule it out if hypermobility isn't a match for you. Just wanted to share this in case it helps others"



    A
  18. EnduringAngel

    EnduringAngel

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    "Hampshire, UK"
    My advice would be to see prof graham, uk top specialist, as some people dont dislocate and are borerline, another dr, a member of his team said I didnt have it, or actually said they wouldnt diagnose with me with it as I had too many other diagnosis!! :O
    I complained via pals, dr was lovely about it, reffered me to prof G who said I def have it.
    So always worth a second opinion.
    Allyson likes this.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Wouldn't this discussion fit better on the EDS thread? It is confusing to discuss the same things on several threads.

    Sushi
    Valentijn likes this.
  20. PhoenixDown

    PhoenixDown Senior Member

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    Would you say your EDS type 3 diagnosis has got more people to believe your symptoms or take your symptoms more seriously? How has it changed your life?

    That's pretty harsh but did you remove the Fibromyalgia, Depression, and ME/CFS diagnosis once you found out the others?

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