I wonder if I can post some of my details and then ask for advice.
I had a TIA back in April 2008 and was seeing a neurologist. I had a lot of tests and was told that I have SLE and referred to a Rheumatolgist who started treating me as such. I had a further TIA in Feb 2009 and over the next appointments it was inferred that I had vasculitis. Whenever I asked if I could have both I was always told that they can run together and it is difficult to give a 100% diagnosis. I was treated for both, I have had Cyclo in Oct/Nov 2009 and then rituixmab in Jan 2010, following on from some blood tests that were taken before the Rituixmab I was told that I have anti-phospholipid and need blood thinners. I started on injections of tinzaparin and then went on to warfarin. I had another round of Rituimab in September 2010 and am having another lot now.
I know some of my tests results but appreicate that these can change, they are:-
Anti nuclear ANA postivie
Homogenous pattern and also speckled pattern (not sure if this was the same test or two different ones.
IGBAB = 26 range should be (0-10)
IGMAB = 14 range should be (0-10)
my C3 are normal but C4 is always low think I have only had one in normal range in the last 4 years.
I have had normal MRI but two abnormal spect scans, the first one in May 2009 which had lots of abnormaliites and then another one in May 2010 which showed improvement.
The rheumy's opinion of this is that there are treating me correctly and seeing results but they recently referred me to a neurologist as my day to day headaches have not seen any improvement.
The neurologist said that I hadn't had TIA's and that I don;t have vascuclitis I have vasculopathy.
I recently suffered some problems with my vision in my left eye and my optician sent me to hospital. They ran a number of tests and said eveything was fine but given my medical problems they thought it was optic neuritis and would refer me to someone else. I saw them recently and they said that there was no evidence of vasculitis in the eye but that I had had a haemoraghe and it was clearly visible. Quite concerning as I saw three Drs before they referred me and they said there was nothing wrong. I recently saw a rheumy and told him about my eye and he asked me to ask the eye Dr if it was caused by vasculitis. I told him that he had already told me there was no evidence of vasculitis but the Rheumy said "well there won;t be now but that doesn't mean that it wasn;t caused by that", the eye problem started in May and I only got an answer in Sept.
Sorry for harping on here but what I wanted to try and find out is what people who are suffering with this condition think about my results, the treatment, the difference of opinions between the two specialists. I just end up confused as I either don;t get a straight answer or I do but then another Dr disagrees.
Thank you in advance for your time and sorry it's a long post.