In need of some advice and wondered if anyone could help please?
I posted 6 months ago about me asking for a referral with an APS specialist at M/C Royal. I had pushed for this and arrived on the day to someone different. I was a little upset. I explained everything to him, even taking my laptop so I was double sure I wouldn't forget anything. He more of less said straight away 'I don't think you have APS'.
I have had 4 positive IgM anti Cardiolipin blood test's at 78, 48, 36 and 34 (range is 0-10) over the last couple of years. IgG in normal range. I haven't seen the results from the latest blood's, but apart from the IgM being high again the rest I am told are within normal limits.
He has put in the letter to my G.P that 'all bloods are stable and we already know that her anticardiolipin has been elevated for a long time, but again that does not mean that she has any anti-phospholipid syndrome?
A little confused.
What he did say to my G.P because I have bruised on occasions without any reason and because I was due to go on a long haul flight was 'because of her recurrently elevated anti cardiolipin antibodies, I have advised a precaution of TED stockings to both her lower legs. It is debatable whether she may benefit with either low dose asprin or low molecular weight haparin prophylactically to prevent any thrombosis, however there is no robust research in this area so far. She may also need precaution before any major surgery to minimize thrombosis risk'.
He then went on to say that due to the bruising that either anti platelets or prophylactic anti coagulation may not be ideal. He left it to me and G.P to decide, but felt bruising may worsen if I took?
He said he would refer me to a Neurologist for a MRI brain scan due to issues over the years with my head (blackouts/fainting - mini fits, losing sight on occasions, migraines). My brain scan appointment came and I had, but no apt for the 'neurologist'. After a month I contacted the hospital and left a message. Today I have had a call from a different consultant to say no TIA's showed up on the scan (happy) but when I asked if there was anything, she said just the normal wear and tear? I know this can happen with age (I'm 46)
No referral has been made to the 'neurologist' she says, and a last apt to discuss with the rheumatology consultant will be sent. The first letter sent to my G.P and me after our first meeting stated that I had one more apt in clinic?
So already decided I feel.
So I know I've suffered no TIA's/Strokes. But no wiser about the bruising, the continued elevated cardiolipin antibodies and loss of sight on occasions and the other things. I will probably be discharged at my second appointment.
I don't want to suffer a stroke (mum was 56 with her first) and feel I haven't really be listened to. I'm also sick of my own voice explaining. But unsure of what to say when I go back to see the consultant. Any ideas?
Also has anyone experienced vomiting in relation to this condition?
Sorry it's so long.