Lupus or something else? Guidance please :)

[Wardlow]

Hi all, I've been reading many posts on here but yet to write myself. I'm in a bit of a pickle. As a child I was always getting sick. Pneumonia twice, constant throat and chest infections. I've always been pale and slight in frame. Then when I hit 14 (probably puberty related) I had to get tonsils out, started to get really bad migraines with aura and contracted glandular fever. Referred to rheumatologist who confirmed I had an underactive thyroid (doesn't work at all apparently) and raynauds disease.

Anyway after this I was so so so tired all the time and never felt well really. Doctor said it was probably me. I tried not to believe this and carried on into my twenties doing OK with the odd migraine and illness but making sure I got plenty of sleep. Roll on to 2012 and I woke up one morning unable to see for a while then vision coming back all kaleidoscopic and blurry. Roll on the next 5 years constantly attending neurologists and trying various medication I was diagnosed with daily migraine and visual snow.

Two kids and two miscarriages and a wedding later I developed chronic low white blood count and sent to hematologist. Also positive ana. I started hearing about lupus so brought it up with doc who referred me to rheumatologist.

Sorry for waffling but rheumatologist did few more tests but said results are 'equivocal'. Said to come back in 6 months but currently don't have lupus. Hematologist said autoimmune neutropenia and if I get a temp to go straight to doc or a and e (freaked me out a little). Just wondering am I barking up the wrong tree with lupus and should I stop thinking about it or does my story sound familiar to anyone??

[Roarah]

The original sight issue sounds as if it could have been Tia or a stroke. I have a similar history of two miscarriages after a successful birth, a history of migraine with aura, and long standing positive ANA with remission of symptoms and had a massive stroke this fall. Did your hematologists run an Antiphospholipid panel and have you had an MRI with and w/o contrast to see if there are infarcts. My stroke and migraines were possibly from a hole in my heart combined with an atrial septal aneurysm but I recently also tested positive for APS antibodies. My hole was closed in November and I was on plavix plus 325 aspirin, just recently changed to lovenox plus warfarin with plavix and I have not had a visual aura since November after a life time of scintillating scatomas. Not sure if the antiplatlet's or the pfo closure are what helped. Diffently ask about APS, it was most likely already ruled out though since are are working with a rheumatologist, hemotologist and neurologist.

Good Luck. Xo

[Wardlow in reply to Roarah]

Thanks for the advice and so sorry to hear about ur stroke. I will ask about the aps I know he checked a few things but didn't give precise results. Take care x

[KayHimm]

Wardlow — I don’t think you are “barking up the wrong tree” but that you are too certain the tree is an elm. Your doctors are clearly concerned, continuing to evaluate and working together to understand your illness. The rheumatologist is saying not lupus at this time but thinks there is a possibility of autoimmune disease and needs to see how things develop. Every patient is very different. Good you have a rheumatologist and hematologist following you.

K

[baba]

For information on APS/ Hughes Syndrome see the following:

ghic.world/

healthunlocked.com/hughes-s...

[Wardlow in reply to baba]

Thank u!