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About brownsea

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  • Birthday 05/03/1974

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About Me

had strange symptoms for two years now.

in may this year i was taken into hospital, and finally tests are being done.

had autonomic function test, mri,blood tests,got some eyes tests this week(october) have to see an immunologist in dec,

fingers crossed the tests should all be back at the end of october as i see the consultant then.

they suspect also that i have hypermobility syndrome.

the meds im taking at the moment are tiding me over until the diagnoses is made.

im on;  beta blockers 40mg, midodrine 20mg, fludrocortisone 0.1mg, paroxitine 10mg,domperidone 30mg.

currently using a wheelchair, only for hospital visits, cant sit up for more than 10 minutes on a good day. although im able to go out in the car, reclined with my feet on the dash.  

ive been in a pretty bad way for two years, brain fog, dizziness, muscle and joint pain, rapid heart rate on standing, tingling in arms, chest pain, white flashing light in left eye, headaches, shoulder pain, neck pain, nausea, bowel pain, elbow pain. the list goes on and on.........................

im hoping to get better, soon.

update; april 2012

i was diagnosed with ehlers danlos - type 3 in april 2010.  had skin biopsy to rule out the vascular type, due to familiar history, my sister died young as did my aunt.  three grandparents suddenly died.   am waiting on results should be any day.

my POTS is still in full force, nearly three years on from diagnoses.  see a neurologist every couple of months, and a cardiologist a couple of times a year.  i have phone contact with both so if anything goes wrong i can get in touch.   been put forward for physio and pain management at The Royal Orthopedic Hospital, Stanmore in north london, has been cancelled due to a flood, so due in anytime after june.   use wheelchair outside.

on the same meds, my fludro has gone up to 0.2mcgs.  due to have a dexa scan this year, i have osteopenia of the spine, that was four years ago.  scoliosis was dx also, yet mild. have tricuspid regurg, cant breathe after a minutes walk, drs think i have elasticity problems with lungs, lft abnormal.  reynaurds, also hot feet and hands.  all the usual pots symptoms.  can sit up now for two to three hours before feeling all the pots symptoms, so have to lay down.  thats improved from three years ago when i was sitting up for only ten minutes at a time.  nausea most days.  headaches.  joint pain.  neck pain.  jaw pain.  sublaxtions.  heat intolarence.  receeding gums.  and lots of fatigue thrown in for good measure.

trying to do things i enjoy, been able to have a few shorts breaks.  sew.  while i go for a push rosy my dog has a walk.  days by the sea, spring, taking pictures, eating chocolate.

trying to do the things i en

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