Hi. I've just had a load of blood tests done and I noticed one of them was Antiphospholipid Antibodies so I thought I would introduce myself and see what you think about my symptoms.
I've been having health problems for sometime now and like many people still waiting for answers.
I'll try and keep my story as short as possible.
Just over 6 years ago my symptoms changed from mild & intermittent to chronic and more severe - fatigue & achiness, 24/7 dizziness, vertigo attacks, disorientatation, brain fog etc.
About 18 mths ago I suddenly deteriorated and started adding symptoms and intensity.
Fatigue/ muscle aches/weakness (debilitating)
24/7 dizziness. Isolated vertigo
Constant pins and needles in both feet, legs, hands & arms, intermittent in chest, neck & face (all worse in heat,) intermittent numbness, shooting nerve pain etc.
Sensation loss in limbs
Sensitive to sun/lights/screens/weather
All over abdo pain
Feeling of pressure on chest
Feeling of going to collapse
Migraine and chronic headache
Some joint pain
Malar rash... Intermittent
2011 - I was diagnosed with vestibular migraine and nystagmus (videonystagmography tests) and treated with meds for the 24/7 dizziness and isolated vertigo attacks. The meds help keep me on my feet but I still have 24/7 dizziness to some degree everyday but it controls the full on vertigo attacks pretty well. I'm currently on 96mg daily of Betahistine.
2015 (Jun) - Malar rash diagnosed as rosacea (no biopsy.)
2015 (Sept) - Diagnosed with microscopic colitis and treated with corticosteroids for 5 months. After 2 weeks on the corticosteroids my dizziness completely disappeared for the first time in 6 years! Hallelujah!! But, on the dose reduction in month 4 it started coming back and remains now. (Still on 96mg Betahistine.) I've been off the corticosteroids since mid Jan.
2015 (Dec) - Diagnosed with vitamin b12 deficiency- Weekly injections.
I was referred to a neurologist last October cos of the dizziness/steroids thing and ongoing pins and needles etc. I had the appointment last month.
The neurologist, after his examinations (I failed many of his test) & consultation believes I have an underlying autoimmune disease and/or metabolic/genetic disorder causing all my symptoms and the b12d. He spoke about Lupus but he said lots to rule out/in .
Last year I had 2 positive ANA/homogenous pattern blood tests in March and June. (1:160 & 1:320. ) ENA panel both times was negative.
I've had more blood tests for a load of things including repeat ANA & ENA, antiphospholipid, vasculitis etc. Waiting results.
Waiting for mri of brain and spine, repeat nerve tests (last done in Jun) and ophthalmologist.
I used to be a very fit and energetic person and my life has now totally changes.
Thanks for listening, I notice there are some very knowledgeable people here and I welcome your input.