So once again I am contemplating going private just to get some sensible answers and get on the right treatment plan but with latest developments I am not sure now if I need rheumatology or haemotology. I will be posting this in APS group and NRAS.
The long and short of it is that I have finally had the follow up blood test for antiphospholipid antibodies which I had 2 YEARS AGO !!!! And surprise, surprise it is still positive.
This is very important to me as it is possibly the cause of my migraines which, on top of everything else are ruining my life. I have tried everything inlcuding HRT which I am still persevering with. I ALMOST paid for the CGRP migraine injections privately as my appointment with the NHS headache clinic won't materialise until 'sometime' next year, when the second blood test result cam through, thankfully otherwise I would have parted with in excess of £1k for something that could easily not work and could easily be replaced with a daily aspirin which is standard treatment for people with antibodies who have hitherto not had any blood clots. That'll be me. On top of all that it appears that hydroxychloroquine is prescribed for APS and can over long term use reduce the antibodies. Is this why they gave it to me when I was diagnosed with Unidfferentiated Inflammatory ARthitis? As some of you may remember I stopped taking it because I didn't feel it was doing much. at that appointment the consultant pointed out the marbling on my legs which I thought was normal and asked lots of questions which I know now were relevant to APS. Why on earth didn't she just say that??? Why on earth didn't she just say it causes severe joint pain for which we prescribe hydroxy and btw you should take an aspirin????
I honestly feel like I am doing this all myself. I could have come to this conclusion with the help of Google and a couple of blood tests. And all the time I am in serious pain ALL the time even at night.
On the APS website there is a list of specialists in Wales and they are mostly rheumatologists. Does anyone know if any are particularly knowledgable about APS? Should I go for one of the haemotologists listed?
My nest appointment with rheumatology is a telephone appointment early next month. I feel like I'm going to end up telling her what I should be doing. There doesn't seem to be any joined up thinking.
Rant over! Any tips about consultants gratefully received 🥰😘