Doctors, Doctors, Tests, and Scans

The fog surrounding my health has cleared just a little bit. These past few months have been a little hectic. Just after my birthday in October I had a neurologist appointment and we went through some of my other non-chiari symptoms, and he suggested that later down the road he would send me to an immunologist. After my trip to Thailand fatigue became a huge impact in my life. I was struggling to do things that otherwise I would have been able to do in an instant. So, after waiting three months for an appointment I finally saw Dr B.

I’m not going to lie, I was nervous as hell going into the appointment. I felt like I didn’t have any true symptoms, unlike with my chiari and so I was scared he would look me over and say it was nothing but the effects of diving. Thankfully I was wrong! He joked and made me feel like an actual patient worth helping. So there were loads of test to be done. And the results: an anti-Ku (anti-goo) antibody in my blood. I’ve tried to look for some explanation online, but there’s maybe one article that was slightly helpful. And really, all that I could discover was that this antibody was prevalent in patients with systematic lupus, and scleroderma. I’m not quite sure what this means for my body, whether there is something else going on, or that this antibody is just present without a cause.

Here’s what I do know about this antibody, other then the funny name. I mean, saying you have anti-goo in your blood is a little hilarious. But this antibody affects the muscles and bones, which explains why going upstairs sometimes kills my knees and hips. If it gets really bad, my lung function may also decrease, and so I will need tests every so often to monitor it. It also means that the worry I had of it all being in my head has been put to ease a little. The result also adds another medication to the list. Plaquenil, a medication that is primarily used for treating malaria, but is also used to help with rheumatoid arthritis pain, and so the hope is that it will help with my pain. The downside of this medication is that I could get even more nausea then I already have, and on the extreme end is that my retina could become damaged, so I have to have eye tests done every six months.

So while these few months have been a bit crazy, we are finally getting some answers. It may not be much, but it’s something that we can go on, and that’s really all I want. I don’t fully understand this antibody, or why it’s being produced in my body, all I know is that we may have a way to get on top of it and it’s effects. And maybe, just maybe, I’ll be back on ten metre doing the things I love with some of my favourote peole.