On Monday morning, I had an appointment with my Internist in the Urgent Care Assessment clinic. As always, I was pretty nervous. He is one of the huge head honchos in Internal Medicine and I have always really admired him. He is one of my absolute favorite specialists.
The appointment led to an all-too-familiar confusing outcome.
He said that my case is beyond the scope of his knowledge (which is saying a TON). We started off by going over the results from my last set of bloodwork (for now) for the immunodeficiency investigation.
The bloodwork shows deficiencies in various types of white blood cells, but the findings do not really make sense - it's a little tough to explain, but certain results conflict with other results.
Now this particular doctor has always had a flare for description.
He said that my issue is absolutely a 'software problem'... That, at the very base level of my existence, nothing is functioning as it should.
So, as usual, he has sent referrals out to even MORE specialized doctors. Hoped to get some answers, but wound up more confused and being referred to new doctors in addition to all of the physicians I see already.
A big reason why we are ALL confused, is that I have autoimmune disorders, but my genetic makeup suggests a primary immunodeficiency of some sort (likely in the actual function of the NK cells).
Wait a sec... let me get this straight...
A portion of my body's immune system is SO strong that my immune response is currently fighting my own organs.... And yet other portions of my body's immune system are SO deficient, that I suffer from chronic inflammation in various body systems, and I cannot properly fight off the slightest infections and, therefore, have to remain on continuous antibiotics.
Furthermore, he said that I may very likely have to be sent to one of the most world-renowned clinics in North America. He said: "There has to be some major genetic defect that is causing all of this. I don't have the expertise to know which tests to order or who will be best suited to figure it out, but I guarantee that your type of case cannot be found in any textbook."
I definitely feel special...
I mean, I would love to create something that lasts forever - but I meant that to be because of my music or something that I enjoy ... Not because of an illness or genetic defect or mutation that no one has been able to pinpoint.
The lighter side - maybe, if they ever figure this out, they'll name this new illness after me. I also hope that all of this investigating will pave the way for other unfortunate people who present with the same health issues.
Confusing results.
No real answers.
More questions.
Another referral to a new specialist.
Anyone else feelin a little déjà vu?