Feeling patronised

As some of you may know from previous posts/questions that I recently saw the rheumatology doctor. He ordered a load more tests and offered the 'diagnosis' of sjorgens serolgy with lupus features. Essentially could be one or other or both but further investigations needed. Treatment has started with Hydroxychloroquine and the potential to go on to methatrexate later - depending upon findings of all the others tests. My results thus far are ANA positive, anti-Ro and anti-la positive, rheumatoid factor negative on 2 occasions. Platelets consistently below normal since December 2012. Last count was 134. Neutrophils consistently below normal since December 2012. Awaiting anti-dna antibodies and a small joint scan. I have a long history of skin sensitivity in the sunlight, urticaria, chill blains, tendonitis, plantar fasciitis, joint pain, anxiety for no apparent reason and since last August significant fatigue and brain fog. I went to see the GP today because she asked me to do so once the letter from the specialist had arrived and as a check before I go to Hong Kong on Tuesday. She showed little interest in me. I asked her what the routine is likely to be in terms of check ups and blood tests. Fair enough she didn't really know but she told me that I am unlikely to have lupus and if I do then it will only be the mild form, which will only cause mild joint pain. She told me not to read anything about lupus. I felt patronised. On one level because I think it is essential to understand what might be going on with my body and two because I am a nurse and already have quite a good understanding. Have you all had such experiences? Should I stop reading and just wait to see what the doctors say?

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  • Hi madlottie

    I'd see another doctor. What does she think you are going to do by reading about Lupins (sorry pet name for condition), go into a psychosymatic phase!!! Lord knows you have enough to be going on with...

    Whatever symptoms you have are your own, we all know how some GPs are very good at generalising if they don't have the knowledge!!

    Knowledge is supposed to be power...YOUR illness, YOUR choice to read about it in order to help YOURSELF.

    Take care xx

  • Thanks lizzidrippin. Yep I think I will change GPs. I can do without being made to feel like a fraud. x

  • Hi madlottie

    I too have felt completely patronised by my GP in the last week> :-( My rheumy is great but GP has all but said he is not interested. I asked for copies of blood results but they were very cagey and asked why, and if it was for my personal viewing!! So I then said can I see my medical notes and thye said "well I can read off what it says if you tell me what you want to know" !!!!!! I've given up again now as I think the hydroxy are really beginning to kick in, been on them 8 weeks now and haven't felt this well for probably 2-3yrs so I'm just happy to be ale to have some more at this stage!!!! LOL!

    I have an appt to see my Rheumy again next month and I find him much more communicable than my pathetic GP surgery. But I am definitely considering moving GP surgeries as they are about as much use as a chocolate walking stick :-( Good luck xxx

  • Glad to hear the hydroxy is starting to do it's job. I have notice my head clearing since starting it. Fingers crossed it will continue.xx

  • When I was first going through diagnosis I was initially diagnosed with Sjogren's. Lupus was diagnosed soon after when my DsDNA antibodies increased with a flare. The treatment was much the same regardless, as were the symptoms.

    My rheumatologist encourages me to read up on my conditions and to do my own research. Like you I have a medical background and she knows I'll select the sensible info from the Internet. Some GPs I think can feel challenged/threatened by us as we are complex to look after. But that's not an excuse to tell you not to educate yourself on your own condition or possible condition.

  • Thanks Lupylass. You are right, I will take the sensible information from the internet and use it to help me manage whatever this turns out to be.

  • I feel very fortunate as my GP has been so supportive. After talking through all my blood results (positive ANA and anti-ro) he actually showed me the lupus page on the patient.co.uk website. He hasn't been able to do much since as I am still waiting for my rheumy appointment but to be fair other than prescribe drugs there isn't a lot he can do. I would ask to see another GP in your surgery and you are entitled to see your notes so ask again. Take care.

  • it initially took two years to diagnose me with Lupus as as far as my 1st GP was concerned i couldn't possibly have it because my mum has it!!

    I recently started taking Prednisolone and was experiencing shortness of breath and agonizing cramps in my calves when walking only a few yards! i went straight to my GP and i was told that it was because I was unfit and I was wearing flat sandals!!!

  • What a bizarre thing to say. I hope your symptoms have improved. :-)

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