Goodness me, I may have 'stage fright'
I am in my forties, and have muddled along bringing up children, helping with the family business and fending off endless health problems as well as I can. As a small child up to teenage years, it became the norm to feel as if I was just about to have flu, or indeed have it, my sore joints dismissed as growing pains and also my inability to heal properly, this combined with sore throats and strep which would see me off school for up to half a term at time.Fast forward to my teenage years, when the worst headaches I had ever encountered arrived out of the blue, these would literally lay me out flat for days, my mother a nursing ward sister tried everything to shift them, her and my father, who had trained as a doctor, (bad health saw that end), were aware that something did not add up, however nothing really became clear. The headaches were such agony that at times I did according to my mother pass out!
Age 19, I had a routine operation to remove 4 impacted wisdom teeth, a few days later I descended into the most terrible infection, which stopped my bladder working and a time in Brighton Hospital, with an out of control infection, this took months to get over, and my health from this point definitely appeared worse. I had a deep seated infection in the jaw bone. Weeks later I came out in psoriarsis,
Fast forward to a young life in London, down the road from St T's. First an admission for a headache which was worse than any that had gone before, after starting on the contraceptive pill. The hospital did not make the connection, however I did, I felt ghastly and decided there must be a connection. That headache was hell on earth, I shall never forget it.
Next came the pericarditis twice, once in London and once in Brighton, both medics said this is strange, but that was as far as it went. Pericarditis still comes and goes with me and now i understand it is a typical feature of lupus alongside my sore kidneys, very bad in pregnancy and also my inflamed lungs and allergies etc.
I just got on with life and accepted that I always had strange things, certainly my recovery from any sort of bug would take weeks etc. I have kept up with fantastic diet and exercise when I can, for all of my adult life.
Fast forward again, aged 23, I was pregnant with my first child, in 1988, I was concerned as I have a naturally curious mind, My eldest sister had had 7 miscarriages, and then a full term baby, who was born a month early by emergency c section due to my sister having blood clots in her legs and lungs, she almost bled to death on the operating table, and was sterilized as a result.
A few years later my other sister had a child, she too in pregnancy, (a few weeks ahead of myself), developed clots in her legs and lungs. My mind went into overdrive and I decided to walk down the road to St Thomas and see my allocated consultant, (I had begged for an appointment). I explained very carefully what had happened to both my sisters, and also that my father had had various blood clots, and also my grandfather had dropped dead young with this. I was politely listened to and sent home within 5 minutes, nothing unpleasant, more of a run along dear etc etc.
The same consultant appeared very pleasantly albeit briefly at the end of my hospital bed two weeks later, and reacted as if he had never met me before - after I had been admitted suddenly with blood clots, (numerous to both legs). I had been sitting in my office in Pimlico over the river, and my legs had become increasingly more painful as the morning had gone on, I did not hang about. I was in bed in St T's for over three months, before allowed out with the jabs, only to be readmitted again..
Due to this and my own vigilance in the first instance, I did have a successful pregnancy, and went on to have two more children, all whilst on 'fragmin'.....including 6 weeks after, with the last two Dr B Hunt was very very helpful, however no diagnosis in St T's for Hughes Syndrome..... as just to make things more complicated myself and my sisters test 'negative' although thankfully due to a very careful professor I now have a clinical diagnosis which has helped make sense of things.
Fast foward again, with my lovely completed family, my health is poor, I have psoriatic arthropathy and sjgroens as well, I take my asprin daily, I do my physio and follow and uplifting life with a good sensible diet, however I have worsening migraines and brain fog and frequently get laid up. The most worrying thing is my children .... my daughter has a daily migraine and is now on asprin, which has practically made them go.... my youngest son had a migraine which lasted 15 months and 4 days, with dizziness and blackouts. He was only allowed to go to school two to three mornings a week, however I taught him at home, and he is now back at school full time and top of the class... the jury remains out as to whether he needs asprin yet, we will await his passage through to teenage years to see if the migraines become daily again, he now has two migraines a month, we are watching carefully..
Where we live, our family have been subjected to the most awful lack of care, and a culture of bullying from local institutions, which thankfully is beginning to change now that the clinical evidence is surfacing.
I am grateful that for a percentage of my life I lived down the road from St T's, and was also a patient at a very modern and up to date GP practice, in Lambeth, which picked up the many illnesses the children had,, which gave me the bench mark to fight for similar out where we live in East Anglia.
Life as always, can only get better.
I have now had all my diseases confirmed. At the grand old age of 47 SLE Lupus, which I have had clinical symptoms for since mid teens, I have seronegative hughes syndrome - multiple clots in my legs during first pregnancy and other incidents prior to that, sjogrens, psoriatic arthropathy and have recently passed some private and very accurate thyroid test for hypothyrodism.
I understand the difficulties of misdiagnosis and at times really appalling attitudes but this is balanced out against having met some truly helpful medical professional who really have and do try to help.
I have had a real fight to get help over the last ten years since moving out of London, and now my 14 year old daughter , in the last month, has been diagnosed with SLE Lupus and probably Hughes Syndrome, my youngest son, is clear currently but needs regular testing, and my eldest son has just shown up with a thyroid problem.
We have started to crack into some great care now, so hopefully things will improve. My own schooling was ruined due to bad health - and always my mother dragging me off to the hospital or doctor only to be told that perhaps there was something not quite right but probably I was fine etc. My mission is that despite long absences from school, my children.. never miss out on academic study, music, camping, travel and huge amounts of humour. My daughter is beginning to pick up on plaquenil... her up to 12 funny turns a day now down to two or three plus a dampening down of other things.. a drug which is out of reach for me due to my psoriatic arthropathy. Here is to a bright spring. Mary F x
i have many things wrong with me but i don't know if i have Hughes syndrome but it is in my family
Finally got the Hughes diagnosis!
I am an embarrassed GP who has never heard of Hughes syndrome.
Completely frustrated
Is it APS or MS or both?
