Experiences with
Arthropathy74 public posts
Hughes Syndrome - Learning and support through information sharing
As a family, tinged with 'Hughes Syndrome' including my young children, and also with two other diseases - psoriatic arthropathy and sjogroens on board, to have another avenue of awareness/support etc will hopefully also bring about some very overdue modern change in the arena of patient/GP/consultant
Goodness me, I may have 'stage fright'
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.
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How can you receive adequate care, if all avenues are blocked!?
Having moved out of London ten year's ago, two illnesses diagnosed, after the birth of my youngest child, (sjgroens and psoriatic arthropathy),however despite having had DVT's 22 year's ago, no diagnosis for Hughes, until recently, due to being 'seronegative'.
An updated version of 'my original story blog' - Goodness me I think I may have stage fright etc!
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
Fatigue and overlapping conditions
My delights are Hughes, psoriatic arthropathy, sjgroens, hypothyroidism and adrenal fuss! I am currently working with a well known practitioner to sort this side of things out, (the hypothyroidism/adrenals) So far, some very practical help and some realistic progress.
A very good news blog!
I have psoriatic arthropathy, psoriarsis and hughes and sjgroens.
So things are gradually being repaired... stress and rubbish that our family should not have been exposed to... due to a neglectful attitude by the those earning huge non medical salaries.
Progress aided and abetted with acid humour
These two things new things - the hypothyroid/adrenal.. very long running as I had spectacular test results). which i have probably had for years, not picked up by anybody, (the story of my life), this included the sjgroens for years and the psoriatic arthropathy, have driven everything else mad and
Being given the run around with diagnosis and other gripes
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.
The difficulties for families with autoimmune profiles.
My own profile, Hughes Syndrome, Psoriatic Arthropathy, Sgrogrens, Lupus and Hypothyroidism. St Thomas' did a test for APS... however as right professor said, if I test negative and do despite my dangerous past clinical incidents... then my children probably will. Her test result showed nothing.