I feel like I start every post about my health off with, “a lot has happened in the past month,” but a lot of things keep happening!
The clinical trial I was in was approved for open label, which means I was able to take the medication and know that I was getting it, and not the placebo. Unfortunately, it made me violently ill and caused horrific pain, so I wasn’t able to be on it for very long. On the upside, I felt a lot better once I stopped the medication! I also stopped taking Corlanor since it wasn’t helping my POTS symptoms at all. Right now I’m trying to find a good cardiologist or autonomic neurologist to manage my POTS, but it is much harder than you’d think.
After being diagnosed with fibromyalgia, I felt as if it wasn’t quite the right diagnosis. Most of the suggestions for fibro patients were not doing anything to help me, and I had a lot of weird symptoms that couldn’t be explained by fibro. My GP referred me to a geneticist because she wanted me to have an evaluation for Ehlers-Danlos Syndrome. He was very knowledgable about EDS and spent most of his career focusing on it. In the end he diagnosed me with EDS and suspects hyper-mobility type, but we’re still going to do the genetic testing to rule out classical and vascular, although it’s unlikely I have either one of those. Honestly, I’m very disappointed to have another diagnosis but I wasn’t surprised in the slightest. At least we can be confident that it’s the right diagnosis this time! I’m currently looking into what doctors are good for EDS in my area, and I’m also looking for a good physical therapist to hopefully help control some of the pain.
… and because for some reason I seem to like getting multiple diagnosis’s close together, I saw an allergist that the geneticist recommended, and she diagnosed me with MCAS. If you’ve been reading my blog for a while then you know I’ve had doctors go back and forth on whether or not I have MCAS for quite a long time. I’m already on a lot of antihistamines and cromolyn sodium which controls it fairly well. I’m definitely not a severe case, but without antihistamines things are pretty miserable. She wants me to start Xolair shots in hopes it will improve my MCAS symptoms enough to come off of all or most of the antihistamines I’m taking. I’ve heard mixed things about Xolair, but I’m willing to try it in order to attempt to take less medications and have less allergic reactions.
I’m hoping this will be the end of the diagnosis’s if not forever, at least for a long time. Having a diagnosis for any of my health issues still feels surreal to me after being undiagnosed for so long. I feel like I’m being directed to better doctors to manage my care, which seems really promising that things might improve soon. Now that we have all the diagnosis’s we just need to figure out what to do to actually treat what’s going on!