My Story

Hi everyone, I think my story is a actually a very common one but though I would share anyway.

Since my periods started at age 11 I had problems, extremely painful periods, headaches, cramps etc. At age 13 I suffered a serious head injury and I was ill for months after with fatigue, vision disturbances painful joints, this was put down to either growing pains or post traumatic stress after the accident I had.

My nan died in July 2006 which was devestating, my uncle died 6 months later, I got married in 2007, my husband was seriously ill 3 weeks before and spent time in intensive care. This seemed to tip me over the edge and I was constantly ill from then.

I suffered terrible rashes, extreme fatigue, painful joint and muscles, headaches, nausea etc.

I was referred to a heamatologist who said I had a positive Lupus Anticoagulant but it was nothing to worry about he also suspected that I had SLE so referred me to a rhuematologist.

The rhuematologist I saw was just the rudest man I have ever met, he said he didnt know what was wrong with me but I wont die and I wont end up in a wheelchair so go away and be brave.

I got worse and worse over the years, life was totally unbearable, the majority of the time I couldnt function at all the pain was so intense that if I needed to go to the toilet during the night I stood no chance as my joints had swollen and locked and I just could not move, still the rhuematologist said I was fine.

Over the years I had 7 miscarriages, last year I had tracheitis 8 times (the most painful thing I've every exprienced) recurring ear infections and sinusitis, I dislocated my hip getting off the sofa! it was just constant, after having a suspected stroke last July and the shocking care I received at my local hospital my parents took charge and paid for me to be seen at the London Lupus Centre. By this time I had 46 different symptoms, It took Professor D'Cruz just 5 minutes to diagnose SLE, high blood pressure, livedo reticularis. He arranged for me to be admitted to hospital for tests - my local hospital had done the wrong tests! I was put on 60mg steroids and other meds and I was to see him one month later.

The next appointment I had with him, he had all of my results back and he diagnosed 17 different medical conditions, 6 of them are life threatening. He said he will be taking the lead on my care from now on, but wanted me to see my old rhuematologist as a local contact.

When I saw my old Dr he was furious that I had seen someone else, he disagreed with all of the diagnoses I had, I cant have lupus as I dont have the dsdna anti body, I cant have Dermatomyositis as I havent had a muscle biopsy etc

He admitted that he knew for 5 years that I had anti-phospholipid syndrome but said the diagnosis doesnt matter, I asked him how he can say this when he knows I have had 7 miscarriages and he shrugged his shoulders and said 'well you didnt die so whats your problem' needless to say he got a piece of my mind and I discharged myself from his care.

I now see prof D'Cruz and 2 other professors at the Louise Coote Lupus unit, they are using me as a teaching case as I have so many overlapping conditions and I see a wonderful rhuematologist in Liverpool, things are better than they were but I still cant remember the last time I had a good day, its a constant struggle, but I feel better having doctors who understand and who know what they are doing.

My advice to anyone is, if you are not happy with your Dr or the care you receive dont wait, change them

x

5 Replies

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  • Thank you for your message. Your story is a painful one to read and how you were left untreated.

    Dr David D'Cruz is a wonderful clinician and has worked with Professor Graham RV Hughes, after whom the antiphospholipid antibody (Hughes) Syndrome is named.

    II always refer people to St Thomas Hospital and/or to see Prof Hughes at the London Bridge Hospital.

    Unfortunately, many rheumatologists do not see or treat lupus patients. They continue to believe that the malar rash, postive antiDNA and lupus nephritis = SLE. Lupus presents itself in different ways and there are lupus variants. The antiphospholipid antibody IS treatable with blood thinners as I am sure you know. To have had to endure the loss of seven miscarriages, must feel unbearable.

    If you would like to talk more and to speak with others, many of whom know St Thomas' and Dr D'Cruz, Prof Hughes or others connected with St Thomas, please open a free account at the LuPUS Message Board: lupus-support.org/LuPUSMB

    Sometimes we need a space to talk without having to worry about our parners, spouses, family or even friends.

    If I can do anything to help, please do so, I can also be found at the LuPUS Message Board.

    With good wishes,

    Ros

  • Thanks Ros, I will join the message board it sounds really good. I'm involved with a local Lupus support group and I find it really shocking how people have been left to suffer by some doctors, I too refer everyone to St Thomas's they are brilliant, I think we should send Prof Hughes and Pros D'Cruz on a tour of the UK!!

  • It sounds as if your experience has left you having many feelings. What comes across, however, is your strength and determination, not only to help yourself, but to others.

    I look forward to speaking with you at the LuPUS MB.

    With good wishes,

    Ros

  • Hi Ros

    Sorry! I've tried to register on the forum but it keeps saying ''The following errors were found:

    Date of Birth: The data you entered is not in the correct format'' I've tried all different ways of typing my Date of Birth but it isnt accepting anything. Do you have any idea what I'm doing wrong?

    Thanks

  • Many apologies for the delay.

    Please enter the following for the DOB: nn-nn-nnnn where n=number. Please don't use nn/nn/nnnn as this will be rejected.

    Should you have any more problems, email me at roz [at] lupus-support org uk

    Be well!

    Ros

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