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Still no wiser!

Posted , 4 users are following.

susan33651
susan33651

Hi,

I've just come back from my appointment with the Rheumatologist and although he agreed there is something going on he wouldn't commit to any particular diagnosis. In the space of three minutes he came up with:

Sjogrens syndrome, 'low grade' Connective Tissue Disease and the one he said was most likely was Palindromic Rheumatism. I must admit having read about the last one it does seem to fit. I'm to continue with the current medications and seem him in a year. (No mention of the rash or my raised inflammatory markers and ANA!!).

Hey ho!

Best wishes to all.

0 likes, 9 replies

9 Replies

  • pam_87693
    pam_87693 susan33651

    Posted

    Well the rash will be SLE where it's discoid or whether you have the mask! So actually I will corrected my self you have Lupus not Systemic Lupus. The pain and possible problems will be osteoarthritis whether your 4 or 40! In my case o had growing pains age 4 bit I do go down the Seronegative line as I have family history of Psorasis and EDS too! 
    • susan33651
      susan33651 pam_87693

      Posted

      Thanks for your input, however, I will accept the Rheumatologist's opinion considering his years of training and experience. My joint pains do not fit with Osteoarthritis at all! One does not get raised inflammatory markers and positive ANA with Osteoarthritis.
  • john62216
    john62216 susan33651

    Posted

    Systemic Lupus is one of the most difficult diseases to diagnose, not least because so many medics frequently know less about it than the patient and it is a truly uphill battle to be taken seriously. I am one of the ten percent being male so that was the first battle I had to fight. I knew something was wrong just over twelve years ago and became determined that I would not be fobbed off. My GP was supportive from the start but I saw seven rheumatologists who were charming if I went private and vague to patronising and rude if I went NHS. I decided to keep a file and demanded blood test results and copy letters of all correspondence. Gradually I built a case history and read everything I could lay my hands on. The most authoritative book is 'Lupus' by Daniel Wallace published by Oxford University press and available from Lupus UK. To be brutally frank it is a horrible disease with many freebies like Sjogrens thrown in for good measure. Auto immune haemolytic anaemia is another. I also developed pulmonary fibrosis which does not have a good prognosis but I am still around six years after that showed up on a scan so determination does pay off. I have written a 'Narrative' of my life with Lupus which I would be happy to send as a private attachment but cannot publish as there are not too many compliments to the 'Profession' in it. 

    Fight on and never take no for an answer. My very best to all!

     

    • susan33651
      susan33651 john62216

      Posted

      Thank you, John,

      I have an inkling that I do have Lupus as all my blood results so far indicate it, also the rash, although on my thigh, always recurs when I have a flare-up of the joint pain. I have also been diagnosed with Trigeminal Neuralgia which is often linked with Lupus. It would seem that many Rheumatologists are less inclined to diagnose Lupus in the absence of certain criteria or the more specific positive blood tests, such as ENA, Complements and so on, despite the presenting symptoms and medical histories of their patients! Like you, I will fight my corner!!

      Best wishes to you.

  • andrew_08416
    andrew_08416 susan33651

    Posted

    Hi Susan 

    I appear to be in a very similar situation to you and like John I am also male and in the UK. I'm going to post in a new discussion after this, as I've not yet been diagnosed, but have the majority of the signs and symptoms including the face rash. 

    My GP fully supports Lupus could be the cause, however I still have to see the Rheumatologist which is taking forever to arrange.  thus far I have been appointed one but I do not have a date as yet. My GP is chasing as is a little miffed at them.

    Hope you get there soon 

    regards

    Andy

     

    • susan33651
      susan33651 andrew_08416

      Posted

      Hi, Andrew,

      I had to wait 30 weeks to see the Rheumatologist!! That was an extraordinary situation, though, we have two in my Healthcare Trust and one retired just as I was referred! When I did see one it was a Locum and he was fantastic, I can't say the same for the permanent one, sadly! The Specialist Nurse is brilliant though, and I am lucky in having a supportive GP too.

      One piece of advice I found to be very helpful is to make as detailed a list as possible of ALL your medical history, signs, symptoms and anything to do with how you feel on a daily basis. No matter how trivial it may seem make a note of it, it may be the clincher in gaining a diagnosis or being fobbed off! Also, get as much history of family illness and conditions as you can, many of the Autoimmune diseases run in families.

      Best of luck.

    • andrew_08416
      andrew_08416 susan33651

      Posted

      Thank you Susan

      I'm not really able to get a full family history but my own personal medical records with all the recent tests and issues would be available.  Including today's CT scan. 

      I've chased my GP to follow up as my next oncologist appointment is in 3 weeks time and the Radiologist commented to have found an issue with my lungs.

      Worrying times indeed but I think it will be OK.  I'll have my GP to also take a look at them.

    • susan33651
      susan33651 andrew_08416

      Posted

      Hi, Andrew,

      I wish you the best of luck in your efforts to get well, it is very disheartening to have so much going on with one's health and to have little, apparently, being done about it. As good as the NHS is it is under enormous strain and the genuinely ill folks seem to suffer with long waits to be seen by specialists, delays in investigations, and cancellations due to lack of appropriate beds. I see this every day in my capacity as a nurse. I work on a Day Surgery Unit and at the moment all our beds are occupied by some rather poorly elderly and medical patients, every day is a struggle to get things done for them. Doctors are thin on the ground and not just due to them striking, they just don't come to our ward unless we harangue them repeatedly!! Anyhow, enough moaning from me!!

      Once again, good luck.

    • andrew_08416
      andrew_08416 susan33651

      Posted

      Hi Susan 

      I completely agree with you that the NHS is deeply strained. Usually I would pester the chemist before my GP anyday, but have gotten to know them very well recently.  You may also think that its Odd but I also support the Junior doctors with their strike campaign, fully.

      I try to be as mindful of others as I can, and yes we all get a little frustrated but i'm not asking for a bed. just to get diagnosed and given whatever treatment I need.  The rest I will take care off myself.  

      From what I've been reading I shouldnt really be moaning as it can take a lot longer for people to get to the stage I have reached thus far. We wouldnt have discovered the inflammation (LDH) if it wasnt for an up and coming Oncologist review. I would not have had yesterday's CT Scan 

      If it wasnt for the rash I'm not sure if my GP would have changed his opinion of Lupus. 

      My GP says that he is dying to findout what this is once and for all. 

      all the best 

      Andy 

      x

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