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Rhumatologist wasted journey

Posted , 5 users are following.

jacqueline00180
jacqueline00180

Hi I had my app today with the rhumatologist and I knew from the minute I sat down it was all going to be a waste of time the minute he got my folder and went um I knew this was going to be a difficult appt he said my blood test were all ok and I don't have an autoimmune desease Which I must say was the best part of the appt he wasn't interested in any thing I had to say because it wasn't auto immune related  he said if he had read the referral he would have contacted  the GP who referred me to say I have been sent to the wrong department he wasn't interest in any arthritis he said there isn't any arthritis as it would have shown I assume you had it when I had the blood test I have inflammatory arthritis of the neck and oestiarthrits in both hands which I had a  trapezectomy and arthroplasty arthritic joint in other hand which wasn't inflamed when I had the blood test he said I deal with powerful drugs of the immune system and i can't help you as I have n autoimmune desease so he said I'll be writing back to GP saying I need to see Eye specialist and Ent who deal with throat nose and the saliva glands I must say it was what I was expecting to be honest whatever I said he was not interested because it wasn't auto immune if I spoke he said I was not listening i did say I get what your saying all I want to do is to find out why i have all this you need to see these specialists well is all I have to say 

0 likes, 15 replies

15 Replies

  • lily65668
    lily65668 jacqueline00180

    Posted

    Well, at least you didn't get put on immunosuppressive drugs. I think that's something to be grateful for. And it's good that he's going to tell your GP that you need to see eye and ENT specialists. If they're good, they can also diagnose and treat auto-immune conditions.

    I saw a homeopathic rheumatologist for years after my first flare of RA when I was in my mid-30s - in a country where homeopaths have to be qualified doctors and trained in any speciality they lay claim to. He helped me tremendously, but unfortunately retired just before I started getting my first SS symptoms 15 years later. I only saw a conventional rheumatologist once after that, but soon realised that was a waste of time as I wasn't prepared to take any of the meds he was proposing - NSAIDs, hydroquinolone, prednisone or immunosuppressives. Ever since then I've managed the condition myself with the occasional help of my GP, and I'm still in very good health at age 72. So don't despair.

    Just one thing. I don't mean to be offensive, but it would make your posts easier to read if you could use full stops between sentences. It's fine not to use them in short text messages, but it makes long posts very hard to understand and people might give up before they reach the end.

  • jacqueline00180
    jacqueline00180

    Posted

    Thank you for replying lily, yes I am very relieved I have no immune disease and do not have to have all that awful medication with its side effects, I am more annoyed I have been off work for two months with a dry mouth sore throat dry cough and dry eyes nose and sinus trouble  then to be put in another direction lost two stone in two month as I can't  swollow proper food and fatigue .

    I have requested a ring back from my GP to see if he can refer me  to these specialist  rather than wait for rhum to write back to him.  You have to be one step a head .  It was a locum GP that referred me not my normal GP.

    I am beginning to realise you need to find your own way of coping and trying    to find things that work for you, especially as treatments well are trial an error.

    If I may say Lilly for 72 you sound so young and positive I like reading your reading your comments its nice to here your still in good health.

    No offence taken.

    • lily65668
      lily65668 jacqueline00180

      Posted

      I hope you can get some satisfaction from your GP. They have to admit that something is wrong if you can't even swallow, though I know how hard it is to get a diagnosis of SS. I've never been in that bad a state, though I still remember going through a lot of pain in my dry mouth days. I got huge cracks at each corner of my mouth that opened up and bled every time I opened my mouth to eat, but still neither my GP nor my dentist would admit anything was wrong.

      I was lucky in that my dry mouth cleared up - or at least improved to the point where I could eat normally - after six months or so. It's never been as bad since, though it's just beginning to be troublesome again now, more than 20 years later. I hope you have the same experience.

      As for being young, here's a funny story I shared on the hypertension forum but don't think I mentioned here. At my last visit to my GP, three months ago, he was going through my recent blood work. He kept enthusing wildly over my renal function results, saying they were the best he'd ever seen in a woman my age. He said I had the kidneys of a 20-year-old woman. I said I'd rather have the face and figure of a 20-year-old, to which he replied that efficient kidneys were more use than good looks at my age! Flatterer...! I always think laughter is good for the immune system.

    • jacqueline00180
      jacqueline00180 lily65668

      Posted

      Hi Lilly will keep you informed on my progress I always knew it was going to be a difficult journey it's my mouth that causes me most of my problems.

      I am in the uk  but I am going to ask for a second opinion may be once I am referred to these other specialist I may get some more answers.

      Flattery is always a good thing and laughter all the best jakki x

  • Megheart
    Megheart jacqueline00180

    Posted

    Was the Rheumatologist basing his conclusion of no autoimune disease on your negative blood results alone? Many people remain seronegative for many years. 
    • jacqueline00180
      jacqueline00180 Megheart

      Posted

      HI megheart yes he was he said you have no auto immune desease your bloods are all good so you can't have Sjögren'.

      He said I should have been referred to Eye specialist and Ent salivary specialist who can find out why these are parts are not working.

      I did go with infomation from uk Sjögren's website I said there is a big percent of people who have negative blood results and still have this deseas he said I "quote" you are not listening to me you have no autoimmune desease so you can't have sjogrens.

  • phyllis75890
    phyllis75890 jacqueline00180

    Posted

    Get another Rheumatologist and get another opinion! This guy was a real jerk!!  Some doctors are like that, I know, I'm a retired nurse.
    • lily65668
      lily65668 phyllis75890

      Posted

      Sounds like Jacqueline is in the UK, which means she'll have very little freedom to choose any of her doctors. I don't live there any more, but spent 10 years working as a nurse in their National Health Service, and I know how it works.
    • jacqueline00180
      jacqueline00180 phyllis75890

      Posted

      HI Phyllis I am waiting for a call back from GP to discuss all this as I have been off work for two month and can't get to see my own GP or six weeks I knew this journey was going to be difficult but it shouldn't be I am lucky not to have an autoimmune desease that's something to be grateful for thank you for replying Jakki x
    • jacqueline00180
      jacqueline00180

      Posted

      Hi i thought I would let you know I have had a consultation with GP this morning who is refering me to an Eye specialist and Maxillio facial specialist its anouther new start.

      I am hoping it is not Sjögren's as it's an awful syndrome but I need answers to why I have all these symptoms and treat it if it's something else thank you all for your comments Jakki x

    • lily65668
      lily65668 Megheart

      Posted

      Amen to that! The one I saw more than 20 years ago because of repeated attacks of conjunctivitis didn't even bother!
    • jacqueline00180
      jacqueline00180 Megheart

      Posted

      Hi megheart I will do everything I read and any advise I am given  I will take with me thank you Jakki x
    • jacqueline00180
      jacqueline00180 lily65668

      Posted

      Hi Lilly your right I have had conjunctivitis at the very beginning of all this trouble and repeated sinus trouble for years and your right no one does bother if they can't see it there and then it dont exists so they don't do anything to treat you.

      I am taking advice on what everyone says and you have to not be afraid of asking question with consultants, they don't like it but they are not suffering wev are I had that experience last time.

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