Struggling to get actual diagnosis despite results
I have had my IG levels tested which came back with IGG and IGA low. So they proceeded to do the pneumonia vaccine test which I failed. They also found that I had low B and NK cells but they "can't tell me what that's about" (!).
They started me on prophylaxis broad spectrum antibiotics which have helped a bit. I won't qualify for IGG therapy due to the funding hurdles here in the NHS and I want to really keep that as a last resort. I also have EDS, POTS and MCAS to name the main bits.
My consultant has never told me the name of what I have. My sister has exactly the same issues and results but much worse but has had no treatment. The only guide I have was when I contacted immunology this week for guidance on coronavirus the doctor casually sent me some guidance from PID UK.
I saw him last week and I have to tread carefully to keep him on side, but he is running a broad range of bloods this time which I THINK are going to cover immune/inflammatory/infections etc but he didn't mention subclasses. This is more to do with the fact I have a constant unexplained fever for nearly a year (well that's how long it's been noticed anyway could have been longer).
Guess what I'm saying is that's my test history and I wonder if it's normal that I'm still so unclear on it all (what it is and what to tell people I.e. what to do around me when sick etc). Thanks in advance.
Edit: https://www.cslbehring.com/vita/2020/coronavirus-ipopi-statement this was the statement he sent me when I queried what I should do isolation wise due to my partner. Would you read from that that my initial diagnosis is PID? Also, the UK government have just announced that those with underlying health conditions should be "sheltered" (whatever the hell that means, thanks Boris) for 12 weeks. Do we come under that if I am to read I have PID? I'm on isolation and work have sent us all home but I don't know if I should be staying in and whether the sheltering affects whether my partner should be going out?
Posted Mar 8, 2020, 1:39 AM UTC · edited