Sticky Blood-Hughes Syndrome Support
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Being given the run around with diagnosis and other gripes

Finally at age 46 I am beginning to make sense of the endless health problems I have had since childhood, and in particular teenage years. However from one medic to another with one complaint thrown in, (forced upon us by the local PCT so it could defend itself), has made my life for myself and family very difficult.

A childhood of one long infection after another, not healing even for a standard playground graze, missing almost whole terms of school for throat infections - in a family with a real emphasis on healthy eating and diet. Glandular fever at age 7 etc etc a familiar tale in autoimmune disease.

My mother took me to one doctor after another as it was quite clear something was not right, severe migraines which went on for days, any tests done always clear for everything, at one time an ulcer on my gums which went right from one side of the mouth to the other in one long line, took weeks to heal being painted with some unmentionable thing. A menstrual cycle which literally floored me for up to ten days at a time, and left me so low after the pain an almost flu like symptoms, that I would then catch a virus on top. This every month since age 13! Everybody around me would have colds, I would just have a reaction to them, however any other bug made me extremely ill. Others at school off for a couple of days, always at least a week or more with me, with very high temperatures. The migraines I had were very extreme and came from nowhere. These disappeared around age 20, apart from the worst headache I have ever had in my life when taking the contraceptive pill for the first and last time. I stayed in hospital a few days, St Thomas', they made no connection to this, however I did. They came back with a bang, age 42 . All my joints have hurt since childhood, and lower back, this ebbs and flows sometimes with swelling, and sometimes not.

Both my sisters and father had had histories of serious blood clots including legs and lungs and my father Thrombocytopenia and serious heart problems including two bypasses. One sister 7 miscarriages, I had none, as I appeared in St Thomas' the minute my legs hurt with my first child, having seen both my sisters develop clots int heir legs and lungs during pregnancy! I pushed my way in before anything even swelled, and was proven to be correct. I had multiple clots in legs.

I have never had proper diagnosis and now I have it is continually discounted or taken away. I have finally now passed a test and have a positive lupus marker, plus speckled ANA result. However recent trip to St Thomas, having taken 10 years to get back in not totally satisfactory. The first doctor, not the one I was supposed to see, mentioned that I appeared to have hypothyroid symptoms... handy that, as I was on the way the next day to see a renowned thyroid expert, however St T's did no test whatsoever. Having then months later returned, was told after they did do a test that I did not have this, however I had by this stage been on independent medication for hypothyrodiism and poor adrenal function for a number of months, and have improved significantly, so of course the test would have been different. If only they had done that first test, however knowing me, I would have failed it. Clinically speaking I had all the symptoms which were worsening.

Also they did not get out my obstetric and other notes, over the months I have asked, (used to live locally to hospital), which would have showed my multiple blood clots and my high level of fragmin for three pregnancies both during and 6 weeks after, plus admission for other ailments plus flare ups after giving birth. I ended up pretty disabled weeks after delivery and an in patient because of this, inflamed hips and back etc and unable to move. I am seronegative hughes, diagnosed by Professor Hughes himself, three years ago.

sjgroens, I have the very dry eyes and dry mouth and quite importantly regularly suffer from the saliva glands becoming infected and blocked, this requires urgent treatment. St Thomas' told me years back I have this.

Lupus, finally I have passed a test which explains a lot, Hughes well seronegative with strong family history alongside my own events

psoriatic arthropathy, visible attacks over years and flares and now underlying thyroid issues which I am making real progress with.

A formal complaint in my own area of the country, which we were forced into making due to being struck off from poor GP service, (my children with scarlet fever aged 5 & 7, took months to get better, my youngest needed 40 days of antibiotics)! Myself, untreated cellulitis from psoriarisis in my ears, causing months of infection, pericarditis and also kidney pain, plus lost use of my hands and feet due to severe swelling, which is how I react to infection. This report came back in favour of the PCT.. saying most diagnosis circumstantial, everything played down. At times I had to hitch to the local hospital in order to avoid the surgery which were so nasty to us. The PCT despite how seriously the ENT department took my worsening symptoms, woman bright red from head to toe, with pericarditis and extreme cellulitis requiring double strength antibiotics, fungal treatments, ear drains and topical steroids etc etc, were disrespectful and inadequate, and made our lives a misery..

I live with one permanently throbbing kidney, which has been that way since severe renal colic in pregnancy 15 years ago. My GP in London noticed beaus line on my nails after each hospital admission for this during pregnancy.

I am currently recovering from nasty urine infection, which once cleared on antibiotics, which I am increasingly allergic to, (in line with many who have lupus), only to develop a wide spread infection in my mouth requiring more antibiotics. I regularly get pericarditis, (thankfully not now), I also deal with chronic insomnia, Currently as a result of these two recent infections, left with two finger tips to type with, and can't get any shoes on!

My medication, aspirin and cocodimol - l can't have the antimalerial types of medication for lupus due to the severity of my psoriaris. I limit my use of diclorofenic.

I do understand the dificulties of autoimmune diagnosis... but once I have it, I resent the constant lack of joined up thinking about it all. I am left with very little faith in the medical profession.

Diagnosis: St Thomas' - finally passed a lupus test. St Thomas' told years back I have psoriatic arthropathy, St Thomas, told I have sjogroens, years back.... finally at London Bridge told I have Hughes. Hypothyrodism, diagnosed very accurately with detailed tests by Dr Barry Durrant Peatfield, at his clinic in Surrey.

Notes to date, sketchy where I live and all changed to labelling or circumstantial ie I am persona not grata medically speaking due to quite rightly fighting for basic care for myself and children. So labelling of hughes and sniffy attitudes about hypothyrodism.

Both my youngest children have had health problems, both have had severe reactions to antibiotics needing urgent steroids, and both have problems with migraine, my son aged 10 was off school for a year with a severe migraine which caused dizziness, blurred vision, phonophobia, vomiting and dead legs. My daughter 14 now has a nasty migraine daily and has had for two years, improved by half on aspirin. She also has a heart valve defect. Myself and children severely bullied by local education service and also mean attitudes from the hospital, which improved once we escaped from the area to try and get help.

Myself and my children are vulnerable not only to perhaps our inheritied gene pool, but to medical attitudes in general.

I do very well really and so does the local PCT, in terms of me costing them nothing - I have not been an in patient in any hospital setting since 1999, all skin treatments done at home, all hydrotherapy done at home, all physio done at home and no expensive drugs! Also a high commitment to exercise and diet and well researched supplements. Just a dose of understanding a a little dignity might help.

It is all enough to drive a woman to drink etc. End of rant Mary F x

7 Replies

Jeez Mary - what a hero - keep fighting for yourself and your family - oh and pour yourself a large G+T later!!

Take care



Yes to the drink and now in London having a two day break!


OMG Mary! We defo need the trampoline and dish smashing session!! Im not only saving my dishes I m going to clear out my cupboards now as it sounds like its getting increasingly urgent.

Hang in there till then!! XX


Yes, well... I am having a little break up in London now, it was all off yesterday, but second wave of antibiotics have kicked in an sudden drug allergy has died down. I have about as much charm as a tethered python currently, so plenty of room for improvement. xxx Sorry about your eye! M F x


wow mary enjoy your break you deserve it and you a plython more like abunny with a machine gun lol


Mary, I have had a similair, experience, and the run around over the years always being told I was a mystery patient. I have far more incidents than in my medical notes because I didn't go to the Dr's on lots of occasions, I would only be told I was neurotic and given valium which I did''t take because I knew they were wrong. For years I have struggled with vertigo and my legs just doing what they wanted to do, at last I have been diagnosed it makes me feel so much better even though I am notin good shape at the moment. The dr's I am seeing still do not seem to know much about Hughes, I have learnt more from the internet. I wish I could get better treatment.


Well here is to joint understanding and comiseration and... life can only get better that is the prescription I prescribe myself. Best wishes. Mary F x


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