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Thread: Breathing Problems

  1. #11
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    Default Breathing Problems

    I am in Uk and here we cannot self refer somebody has to refer us. i am going to London Lupus Clinic in January I will speak with my Consultant then.
    Val

  2. #12
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    Most specialists here - I guess what you call consultants in the U.K. - also require a referral, but most GPs will refer patients to a specialist when asked. Can your GP refer you to a lung specialist because of your COPD and asthma?

  3. #13
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    Default Breathing Problems

    Yes he could. I feel despondant here where i live. I have seen since 2001. Orthopaedic, Neurologist, dermatologist, Nephrologist, 4 Different Rheumatologists, 2 Haematologists, Gastro Enterologists. 2 Opthalmologists, they see me decide whats wrong or not then discharge me, my GP and London Lupus Clinic are the only people who really take me seriously. Dr Hughes diagnosed me himself (I am sero negative) 3 Rheumatologists have said"His diagnosis is wrong"
    What chance do I have.?
    It is written that 90% of Lupus sufferers are ANA positive , that means that 10% are sero negative but only a Lupus specialist will diagnose that, and there are not many of them in UK.
    Its such a battle to be treated so I stay away from Hospitals as much as i can.
    Val

  4. #14
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    I know you must get terribly frustrated - a lot of lupus patients here have similar problems, especially if their labs are negative or inconclusive. I was lucky in that when docs finally figured out my strange and seemingly unrelated medical problems might actually be related, when they finally did the antibody tests, all the labs were positive and ANA titers were in the five digits, so the rheumatologist I was referred to took it pretty seriously, especially since I had CNS involvement. I can't imagine how frutrating it must be when you don't have labratory proof of lupus since that's all most doctors seem to accept.

    Most of the statistics here say it takes a lupus patient 7 years on average to get a correct diagnosis. I suspect it's the same in the U.K.

  5. #15
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    Default Breathig Problems

    Hi Mary,
    thanks for repling. Yes if I hadn't gone to London--100 miles away I would never have been diagnosed. my ANA has stayed negative but Dr Graham hughes diagnosed me with SLE, APS, Sjogrens, Poly Arthritis and Fibromyalgia. I have also had Costochondritis and Plantar Fascitis added.
    I have so many other problems, Hypothyrodism, High Cholesterol, High Blood Pressure. I have blood in my wee. A permanantly high ESR.
    I had an EEG which showed circulation changes which helped Dr Hughes diagnose APS.I also have had low Platelets andlow Potassium.
    I have Bursitis in both hips and Osteo Arthritis in knees and shoulders--a legacy of 33 years of nursing, most of which was during the days of no moving and handling rules--we lifted folk in and out of bed.
    I know I am ill my Gp recognises it. The NHS pensioned me offw ith my illness. Now I just get on with things as Consultants just don't take me seriously.
    I am sure you understand how I feel. Been ill For 5 years--only 2 to go lol
    Val

  6. #16
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    Hi Val,

    Sorry you are having such a difficult time of it! I am a fellow brit living in Oxford.

    The law is changing in Britain so your GP will be able to refer to any hospital in the country. There are some good Lupus services around apart from London there is a new centre in Southampton hospital. They are very friendly and I took myself to A+E there when I had my last really bad flare and actually got some treatment rather than just being patted on the head and being told there there!!!! Also my sister has RA and got herself refered to Bath rhuematoligical hospital. It took some fighting but it has made the world of difference to her as it has meant good treament from the best doctors, not only drugs but other therapies and good tests too. They do all rhuemy diseases.

    I know all of those are down south and so a bit of a distance for you but there might be some closer to you.

    Do you belong to Lupus UK? They might be able to support and advise you?

    My aunt is in the same boat you are. Her GP doesnt believe Lupus is real, but my other aunt and my Nan were both diagnosed with SLE so she knew she had it. She has now been going to St Thomas's for years. Its just a shame we all have to play such silly games to get the care and treatment we need!!!

    Take Care
    KTJ

  7. #17
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    Default Breathing problems

    hi KTJ
    I started a support group with lupus uk. We had big problems and we became independant. I fund raise for St Thomas Hospital now. I know the money goes to research then.
    I see Rheumatologist, Haematologist and St Thomas Lupus trust yearly. They are all in January LOL. I might get some results.
    My son lives near Wantage so I come down to see him. Lovely countryside.
    Val

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