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Thread: 81/2 years, 12 doctors and 3 hospitals later

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    Post 81/2 years, 12 doctors and 3 hospitals later

    Hi All
    My name is Jan and my story started over 10 years ago. I kept getting headaches which were gradually getting worse. I had been at my daughters for Christmas and on Boxing Day I had a humdinger of a headache. I took painkillers but I gradually felt worse. We came home on the Monday and between then and the Thursday I had either spoken to or seen a doctor regarding my head. It wasn't till the Thursday when I saw my own GP that he said to my husband that he wasn't sure what it was but if it was what he thought it was and he didn't start treatment that day then I would be blind by Saturday. Scary but as I was completely out of it I didn't care He started me on 50mg of Prednisolone that day. I went to bed when we got home as I was always tired whilst this was going on. At about 5 I woke with an almighty headache and Keith called the doctor. He came out and gave me an injection and I promptly went back to sleep again. I woke at about 8 and for the first time in days I felt well.
    The next morning I woke and was still feeling well. The doctor rang and told Keith that he wanted me to see the Eye Department at Kettering General Hospital. We went and I had another blood test and went back to the eye department.
    I had the test and promptly collapsed. I was then admitted as they had found out that I was diabetic and needed monitoring. This was New Years Eve. I spent a week in hospital and came home with an armful of meds.
    Over the next few weeks I felt wobbly and when I had an Outpatients appointment the doctor wanted me to see a Rheumatologist.
    On this appointment I had an extensive interview with a houseman and then taken to the Consultant. Again lots of questions and at the end of it came away with lots of blood tests to have and a 24 hour urine specimen to do. He also said that I could have Wegener's. The tests all came back negative so I was just monitored till the consultant retired and a new one took over. He said that he too thought that it could be Wegener's a d again just monitored me for a few months and then put me on an SOS appointment where I would ring him if I felt bad. After 2 years he discharged me without telling me!! I had started to get a cough which I couldn't shift and went back to my GP who referred me to Bedford Hospital Chest clinic. Again there I saw a multitude of doctors from different departments including Rheumatology but didn't get any further with a diagnosis.

    On researching Wegener's on the internet I found a Rheumatologist by the name of David D'Cruz who is a world expert on Wegener's and was doing a study. It meant going to London to see him but my GP got the funding and I went to see him. After an hour's consultation with him he told me that my symptoms definitely suggested Wegener's and also Temporal Artritis. I came out of his rooms with a sheaf of forms for tests and had some on that day. I had a relapse last year with extreme pain in my right kidney but only had antibiotics to help it. This carried on for 2 months and apart from some residual aching in my kidney is now ok. He said that he will treat me when it rears it's ugly head again but my problem is that it can take 2 months for an appointment to see him.

    At present I am reasonably well (as far as I can be with this) and try to do as much as I can in life. You can't just give in to it can you? I keep busy doing Patchwork & Quilting, Dressmaking, baking and gardening in our allotment and only give in when I have to. Hope that this helps the newbies.

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    Hi Jan and welcome to the forum.

    You are correct, giving in is not an option

    There are many members on here from the UK and I hope someone lives in your area.
    How wonderful that your GP arranged for you to see Dr D'Cruz in London, and that he will treat you for WG.
    It also takes 2 or 3 months to get appointments in Australia too.
    If you are really sick though, you could head straight to the Emergency Dept and hopefully get to see him/someone that way.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Welcome to the forum, Jan. I saw this last night but was too tired.... typical Weggie. I'm almost there again tonight. Well, once again, you are presenting a case that is somewhat different than any on here, as no two seem to be the same. I'm a little confused that this could be going on for so long, with them thinking you may likely have WG, but getting no diagnosis, and you don't mention being on any of the standard treatment for WG all that time, except for the prednisone. It's true that WG may tend to 'smolder' for years before it really flares up. But those headaches sound troubling, and I realize those could be from the Temporal Arteritis, which I'd think you should also be getting full treatment for, if a doc thought you were in danger of going blind. Sometimes people get treated for these things without a positive dx from test results, but based on symptoms alone, and an educated guess. By full treatment, I mean a standard immunosuppressant, of which several may be used, in addition to the pred. I know someone with TA and she was on methotrexate and pred. But if the pred alone gets things under control for you at this point, that is good. It seems strange that the kidney would flare up for two months and then settle down on its own, though, to the point where treatment would be delayed until it flares up again. Or were you in fact treated for that? And was it considered to be WG involvement in the kidney or something else? You've talked with one expert and I know there are others in the UK whom some of our forum members see. It can't hurt to have more than one opinion. You might check out Dr. Jayne at Addenbrooke's Hospital in Cambridge, who treats several members here. He can be found on this list of experts: VF Medical Consultants . I can't imagine anyone in a severe flare needing to wait 2 months for an appt., and that might not be the case if someone was in that kind of danger. But Michelle's idea of going to the ER is always there as a last resort, or even the first one, sometimes! Best of luck, and let us know how things turn out.
    Anne, dx'ed April 2011

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    Hi AnniekatThe whole problem with my diagnosis has been that WG is so rare and was not considered when I was first ill and not tested for it. I have had consistently negative biopsies and ANCA blood tests which puts the docs off diagnosing WG. It has only been since I saw Dr D'Cruz that the diagnosis has been made. I did have temporal artritis at the start which also clouded the issue. After my kidney problems in September Kettering General (not my favourite place as their labs are not the best) decided that it was a kidney infection and not a flare. I had taken antibiotics for two weeks which did nothing for the pain for which I was taking Oromorph. I just have to wait for another flare and see Dr D'Cruz again and hope that I have better luck next time. They were moving their clinic from St Thomas' to Guys the week I saw him and they did not have my full set of notes. I will go to A&E next time to see if that makes any difference. After all when I first read about WG on the Internet it said that untreated it is always fatal!! Heyho just keep taking the tablets. Good luck to you Jan

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    Yes, a lot of us have had delayed diagnosis for that very reason, the rarity of WG and its ability to mimic other conditions, along with whatever other issues we may have on top of it. It gets very complicated, and its no wonder that docs who are unfamiliar with it are in over their heads. Thanks for the further explanation, and best of luck to you, too!
    Anne, dx'ed April 2011

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