Recent APS "flare up"

[Bsharon]

Hello everyone .

I'm a 28 year old female from the praires of Canada . Was diagnosed with Lupus Anticoagulant & APS after miscarriage and positive blood work . My mother also has APS but also suffers from ITP .

I've been suffering the last couple weeks with what seems to be a "flare up" . It started a couple weeks ago with numbness to my right side . It would come and go for a couple days . Then I started to experience numbness on my face and dizziness / slight headache. I was seen by my GP numerous times that week . She reassured me it was nothing to be concerned with and it was probably stress related . At this time she advised me I should discontinue my birth control as it was not safe with my "lupus" . My symptoms seem to come and go throughout the day , I would also get a strange vibration sensation throughout my body . Suddenly one week after my initial numbness I was having trouble with my vision . I went to the hospital where they did a CT scan with contrast and found absolutely nothing . The internist I saw was not well educated with my automimmune and wanted to consult a neurologist about possible MS. The neurologist returned to say he didn't think it was MS and thought it was caused by migraines. The next few days I suffered from sore muscles and joints . I have been taking aspirinx2 a day and Tylenol everyday which seems to help . When I had my blood work done my inr was .9 which after reading many of these posts I have realized this could be the cause of my symptoms.

I should also mention that when I was first diagnosed with APS I was told the only complication would be pregnancy. Never once was there a mention of the risk of clots or symptoms related to this autoimmune. It's extremely frustrating not knowing what I'm truly dealing with . My doctor reassured me it was not MS but nothing else was done about my symptoms .

I have an appointment booked with the same hematologist that my mother has seen. So I'm hoping that he will be able to offer some guidance .

[MaryF Administrator]

Hi, welcome, I agree with the advice to 'join us' and get the book! A good first move! You now need your GP and yourself to be guided by a proper Hughes Syndrome/APS consultant, please look at the consultants on the website. If you are not on proper anticoagulation and or Aspirin you are at risk, of continuing worrying symptoms. You have been given the sort of advice above, that I would have given. Please do keep pushing forward with this, and do stay in contact and feel you can use this forum to ask us questions. MaryF

[jetjetjet]

you can copy the info also as the gal's have said of the book and take it with you and make sure they understand and educate yourself as you may like a lot of us need to make sure you are treated properly

and welcome to the sludge bloods