Iv been unwell for the past 18 months. Started with haemoproteinuria then april last year had multiple pulmonary emboli.
I still keep getting episodes of superficial thrombophlebitis in my left forearm.
Iv become folate deficient and keep having episodes where i cannot pass much urine. Started on diuretics to get my kidneys going again. Nephrology think they may be missing nephrotic episodes but kidney function satisfactory.
Been referred to opthalmology for episodes of intermittent night blindness. And low vision. Awaiting results from optical coherence scan and just had electrodiagnostic testing photographs and a repeat eye scan. Get results in 2 weeks time.
Have recurrent chest infections, glands in left of neck persistently swollen and tender, pain in my hands feet and kidneys.
Having sweaty cold clammy episodes, shivers every now and then, sores in my hair. Im more often tachycardic and starting to get a bounding heartbeat.
Iv had hormonal tests all negative. Im Extremely fatigued all the time. Can sleep for 12 hours and feel exhausted all day. Im breathless on exertion,chesty every morning and cough up but clears as the day goes, i do have episodes of coughing up blood, blood on blowing my nose, sores in my nose are terrible only in right nostril.
my lung function is good. Iv been tested for TB and legionaires all negative. Respiratory consultant said my lungs are clear from his perspective the only other thing is a HD scan to see if i have bronchiectasis.
I get aching chest pain on a regular basis.
My GP keeps going down the lupus / vasculitis root. All coming back normal but recently had raised PCR.
My IGA is raised persistently.
Iv not been able to get lupus coag screen due to being on warfarin but haematology arranging this and thrombophillia screen.
Iv now had the throbophlia screen and some element of it has come back slightly abnormal, but they wont tell me what, my appointment was cancelled that was pending (july) and im having a repeat of the tests mid sept. The only thing i can think is that the lupus anticoags is the test thats abnormal due to leaving it so long before testing me again. ( need 2 consecutive results 12 weeks apart)
I have alao got appointment with immunology this month that i have waited for for months.
Does any of this sound like anyone with lupus or vasculitis. Im at the end of my tether and its now affecting my mood. I feel like I'm going mad and wasting resources
Any help appreciated x