LUpus Patients Understanding and Support

Please can someone help me with advice

my situation is complicated so I will try to condense it and hope someone can give me advice. Lot's of symptoms since my 20's. No help off Drs except misdiagnosis of fibro twice over 8 yrs for which I put a complaint in for his appalling manner. My symptoms worsened greatly last 2 yrs, (47 yrs) with falls, numbness, confusion, blurred vision Etc. Told there was nothing wrong with me except anxiety.GP referred me for appt with psychiatrists(whilst smiling and saying he didn't think I was mad). Backfired on him as this Dr thought lupus for me and my 12 yr old daughter (she has the facial rash aswell as symptoms) and I was referred to lupus Dr.

To cut it short, the lupus Dr immediately thought mild lupus for me, positive schirmers & lupus anticoagulant aswell as 20 yr history. This changed in Jan when the Dr that misdiagnosed me rang him. I was then dx with autoimmune rheumatic disorder whilst waiting for lung cat scan results. Became ill in March n was dx with polymyalgia rheumatica by Gp. Returned to lupus Dr in May who retracted autoimmune dx and said just the pmr without having the cat scan results and saying he didn't need to see them, wouldn't discuss anything, answer questions etc and discharged me. ( pmr is an over 50s illness so he has discounted 20 yrs of symptoms)My gp won't help my daughter who's symptoms are verging on the ridiculous. When my daughter had protein in urine with no infection, GP said it's far more worrying if she has an infection. Anemic for nearly 3 yrs.. Temp loss of sight (told it was nothing to worry about as it didn't last very long) confirmed inflammation in eyes, by optician. Back pain, numbness in legs, Swollen glands, Hair loss, weakness, spasms, stomach pain, vomiting etc. The list is too long. Due to these 2 complaints I previously made I am now blocked constantly when trying to get help for her.

I live in a village and it seems changing GPS wouldn't help as all it takes is a phone call to say I'm a problem patient.

I have tried everything I can think of for over 2 yrs now and I don't know what else to do.

3 Replies

Dear roubbyroo,

I am very concerned reading your post. I do not know where you live but I would recommend you ask for an NHS referral to see Dr David D'Cruz at St Thomas' Hospital, London.

Alternatively, if you have health insurance, I recommend Professor Graham RV Hughes who is at the London Bridge Hospital:

Dr Graham RV Hughes is an internationally acclaimed clinician and researcher. Hughes (the antiphospholipid antibody) Syndrome is named after him.

I appreciate this must be very distressing for you and anxious for your daughter.

With good wishes,



Thanks for your. reply Ros. At the same time I received my 2 nd misdiagnosis of fibro my daughter was seen at the RVI. He disregarded every non hypermobility symptom she had after hearing I had fibro and a snowball effect seems to have happened. I was convinced by GP to let daughter see a lupus prof at alder hey after my ' lupus' dx. my daughter was then seen by the only rheumy out of 5 there who does not specialize in autoimmune/lupus illness. (I found this out later), I provided 26 photos at initial appt with list of symptoms. He then asked if daughter had ever been dx with chronic pain?? (repeat of RVI even though photos showed, gland swelling, lip/facial swelling, rash, nail damage eye probs)Basic bloods were taken, without kidney function test (I asked the nurse). No autoimmune blood s.

I should add, in March wen my Gp had blood test results taken by Q. Doc he treated me like a hypochondriac and commented that, "i see you managed to get yourself steroids then'. He lied about urine results also saying there was no blood. (I have those results now) ESR 38, high white cell count n blood and protein in urine.. I've had raised plasma viscosity, crp etc on/off since Sep.

I am in a vicious circle of Drs refusing to help my family.

I strongly urge anyone not to put a complaint in against a Dr until they've had there 2 nd opinion as they could find themselves being blocked at every turn.


hello Roubbyroo,so sorry to read your horror is an absolute nightmare getting diagnosis for lupus.i had similar,but not as extreme,experience.i had lived in netherlands for 10 years and was very happy,life was good.then from the blue i started having "panic attacks".at least thats what diagnosis was there.i felt so ill i packed up and moved back to my mums in uk,leaving every thing and coming home to nothing.i thought i was dying.i was told by uk gp i was depressed!refused tablets for this.changed gp,got diagnosed diabetic,but "fit like"episodes said diabetes related,i still felt too sick for body would cramp and hurt at everything i did,i couldn't string words together,hard to put one foot in front of the other,and scars all over my body inflamed and hurt like cigarette burns,i can't explain how ill i felt.after pushing and pushing,i had a biopsy taken,which showed something unidentifiable!!this is when drs got interested,i was seen by professors from all over the country!anyway,i got to see prof.Hughes,and cruz,and my life began to improve!i owe them a debt,and can't advise enough for you to try your best to get to see someone at the louise coote lupus unit at st.thomass,london.i am on a lot of meds now,but got my life back,to an extent.dont stop pushing,and best advice i can give is to go through all your history carefully with every new dr you see,i had so many mistakes i had to rectify with drs along the way,they only know what they have been told by someone else,not you,and that leaves room for error.good luck,keep pushing.x


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