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Update on hospital visit.

Discussion in 'General ME/CFS Discussion' started by KellyJoanne, Jan 13, 2014.

  1. KellyJoanne

    KellyJoanne

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    I finally had my rheumatology appointment which I've waited for, for months. I just got a letter through the post which is a CC of the letter written to my GP from the specialist. I'm still waiting for my M.E/CFS clinic but I thought I'd share with you the findings so far and see what you think. I'd also like some interpretation as I'm unsure of what they mean.

    Diagnoses: Arthralgia and Chronic Fatigue

    It has been noted that I have weakly positive ANA and CRP 2. CCP, rheumatoid factor, ENA and DNA antibodies were all negative.

    "I think the weakly positive ANA is probably a red-herring. She has a marginally elevated eosinophil count which I think reflects her asthma"
  2. maryb

    maryb iherb code TAK122

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    @KellyJoanne
    Sorry I can't help with the interpretation. What I see is a rheumatologist who's made a wild guess linking a positive ANA to asthma - possibly to avoid further investigations, that is sheer laziness?

    Arthragia just means joint pain - he/she has not specified/diagnosed any cause/disease?
  3. KellyJoanne

    KellyJoanne

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    He did rush me in and out again. He pulled my legs and arms about and said I'm quite hyper mobile in my wrists and hips. He said that 'many dancers are hypermobile' and didn't explain why they are.

    I haven't really been affected by asthma since I was about 13. I'm 20 now and I'd actually go as far as saying I don't really suffer from it anymore.

    EDIT: He was going through the list of things like "Smoker?" "Do you drink?" and ticking them before I'd even had a chance to reply.
  4. KellyJoanne

    KellyJoanne

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    Anybody able to interpret this for me?
  5. Esther12

    Esther12 Senior Member

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    A lot of doctors are crap when it comes to CFS and related issues. There's been a history of quackery this area, which has encouraged many to view CFS patients in a 'biopsychosocial'/disdainful manner. Even those who don't follow this approach, can still be influenced by it into treating patients poorly.

    Did you see them after you had done any reading about possible connective tissue disorders? I mentioned the possibility of EDS III/PoTS or similar being significant for you, and you thought that could be worth exploring. Was this discussed at all?

    I have seen people complaining about rheumatologists missing these sorts of diagnoses, and generally being dismissive of anything related to CFS. From what you've already said, I think it would be worth you getting an appointment with someone who specialises in this area.

    I have no idea about things like the ANA result, but a quick google indicated that this could be related to connective tissue disorders:http://www.hss.edu/conditions_undifferentiated-connective-tissue-disease-overview.asp

    In isolation, a result like that may not be important, but it could also be an extra reason to thoroughly explore that area.

    Sorry to hear it wasn't a great appointment.

    Personally, I'd be a bit cautious about the ME/CFS clinic too.
    MeSci and cosmo like this.
  6. biophile

    biophile Places I'd rather be.

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    I had a weakly positive ANA but it was tested again later and came up negative. Your doctor might retest later too. As maryb said, arthralgia (and chronic fatigue) are symptoms rather than diagnoses. Good luck with further investigations.

    I did a quick Google search for an elevated eosinophil count.

    http://emedicine.medscape.com/article/199879-overview
    http://www.patient.co.uk/leaflets/eosinophil_count_raised.htm
    http://en.wikipedia.org/wiki/Eosinophilia

    It seems like a fairly broad marker, but connective-tissue disorders is included (you mentioned hyper-mobility). Similarly, CRP2 may indicate rheumatic and inflammatory conditions. Depending on the normal range of the test, the doctors may not care much if your tests are only marginally elevated.
  7. KellyJoanne

    KellyJoanne

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    He said there is no connective tissue disorder or inflammatory arthritis in the letter. He just seemed to want to pin it to CFS the second I mentioned having an appointment at the clinic. It was almost like "Great, now I can pin it to that and get her out the door asap"
  8. cosmo

    cosmo

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    I'm sorry for their abruptness.

    I have been in a similar position to you, I always get a positive ANA which the Dr's dismiss it and I am sure that I have a connective tissue disorder, but it seems to be dismissed even though I have not had relevant testing for them, I believe I have POT's or sjogrens.

    I don't have any advice, but I'm where you are and tbh I have all but given up getting help from my Dr's. It seems as soon as one suggests it is cfs they just presume everything's done with you and if you think it's something else you may well be crazy!
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'd be very cautious. Do you know which clinic it is? It would be wise to check out their website to see if they just follow the usual dangerous CBT/GET routine. If they do, my advice would be to steer clear.
    taniaaust1, Purple and golden like this.
  10. Esther12

    Esther12 Senior Member

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    Yeah, that sort of attitude doesn't surprise me I'm afraid.

    It could be that he was able to quickly do a good and thorough examination that correctly determined that your hypermobility is just coincidental to your symptoms, and not something worth pursuing further... but it's hard to be confident that this was the case.

    If you were at a centre that specialised in these sort of conditions (like http://www.thehypermobilityunit.org.uk/ ) then one could be more confident that the rheumatologist knew what they were talking about. If it was just someone you were referred to because of joint pain, then it's more likely that they missed something.

    Did you have any sort of discussion about Ehlers Danlos, etc? There are things about you which make me think that this could be important for you, but it is also possible that you do just coincidentally have these signs at the same time as something else having caused your health problems.
    Last edited: Jan 14, 2014
  11. KellyJoanne

    KellyJoanne

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    I'm going back to the doctors today. My hair is starting to fall out a lot more and I've got sores in my mouth and nose again :(

    I did mention Ehlers Danlos and he said straight off that I didn't have it.
  12. brenda

    brenda Senior Member

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    @KellyJoanne those are biotin deficiency symptoms. Look it up.
  13. golden

    golden Senior Member

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    Clear Light
  14. Esther12

    Esther12 Senior Member

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    Do you know if you were assessed via the Brighton criteria (which confusingly includes the Beighton criteria), or what score you had?

    If he'd specifically considered that diagnosis, then one would hope that he did properly examine you for it. Most often people with this condition do not even have the diagnosis considered.

    I've seen people complaining about rheumatologists failing to diagnose these sorts of conditions, but also, I don't want to encourage you to pursue a diagnosis which may not be relevant.

    Here's some info on HMS/EDS diagnosis: http://hypermobility.org/help-advice/hypermobility-syndromes/the-brighton-score/

    If you were seen at the clinic I posted above, I'd think it's safe to assume that they did properly assess you. It is harder to be confident otherwise.

    Really sorry to hear about your difficulties, and that you did not get helpful information from the rheumatologist. Hope todays appointment goes okay for you.
  15. taniaaust1

    taniaaust1 Senior Member

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    I hope you are fine. Please get back to us if you are able to so we know u are okay... (I truely dont trust bad doctors and the power trips they can do).
    Little Bluestem likes this.

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