Unfortunately - STILL no concrete decisions have been made. My bloodwork has got everyone stumped. It is as though my bloodwork always shows as mild while my symptoms show as severe.
So... Technically... To have Hereditary Angioedema, the C1 Esterase Inhibitor levels OR function numbers should be low. It is actually not often that they are BOTH low unless the levels are at 0. I will explain this all in detail once the diagnosis is made.
BUT - it is unlikely to have HAE if the C1 esterase inhibitor levels are low but the C3 and C4 levels are not. Then there is something called Acquired Angioedema...
So my C1 levels and function levels have both been low and have been checked multiple times. But my C3 and C4 levels were only low once, and that was when my thyroid levels were also out of whack.
Basically - they have no idea if they should diagnosed me with HAE or AAE... All of the SYMPTOMS point toward HAE... But the bloodwork is so confusing that the decision is hard.
Basically - we need to re-check my C3 and C4 levels during a MASSIVE throat swelling angioedemic attack. So how do I 'make sure' that this happens? It has also been suggested to possibly go see a specialist in this particular area either in Toronto or in the UK (where the majority of the research has been done).
I had four doctors in the appointment today, along with another doctor on the phone consulting... And they are all stumped.
Great.
So what's the plan?
The plan is to see my amazing internist on Thursday... See what he has to say, then request my grandmother's records to see if she was diagnosed with this, then (if it is still unclear), I will either be headed off to Toronto or I will be sending my information to researchers out in the UK and might be headed there - who knows.
My very first specialist at the Children's Hospital called me an "enigma" when I was 14 years old.
I don't think he had any clue to what capacity that term would end up being used in my life concerning my medical history.
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