In roughly the last 12 months I have played this game more times than someone should have to do it in their lifetime. Bodies are weird. I’m beginning to think humans never made it out of the beta program. It’s also demonstrated just how horrible health care insurance is in this country….which is scary since having insurance is still better than having none.
Last summer I went through a rheumatologist’s battery of tests and ended up a diagnosis of fibromyalgia. It’s not Lupus! This diagnosis did actually make sense for a number of until then unexplainable symptoms and I reacted to like all or almost all of the fibromyalgia tender points.
Last summer I also went through a cardiologist’s battery of tests. This ended in a “there’s nothing wrong with your heart.” I also found out that red-40 food dye can give me tachycardia bad enough to make a cardiologist nurse insist on doing an EKG.
Last fall, I think, I started to develop a horrible rash that almost nothing would make feel better that I dealt with into the spring. I’m pretty sure now that was from the gluten intolerance I didn’t quite figure out until late spring/early summer.
Then I saw the immunologist to restart my allergy workup. He sent me to a GI doctor to check on those symptoms. The GI doctor performed an endoscopy and colonoscopy and found lots of inflammation and way too many polyps for someone my age. Also tested for celiac and that was negative. He sent me to genetic counseling – I think the genetic counselor or testing center lost my information and I only recently found the paperwork so I can consider calling – which may or may not be the old phone number from before her office moved. (The test takes 12 weeks to complete.) Additional followup and discussion with immunologist led me to try the low histamine diet for histamine intolerance. This diet has improved many symptoms.
I’ve also found out little things, like I’m chronically low on vitamin D and starting the 50,000 IU/week dose of vitamin D improved a number of my symptoms. Doing things like introducing magnesium and CoQ10 have also helped immensely.
Now, I’ve seen a neurologist about my migraines and the MRI of my brain and cervical spine found lesions in my brain and neck. This is a possible sign of multiple sclerosis. (Hey! I spelled it right on the first try!) Today I see another neurologist for an MS workup. I don’t know if this will lead to another set of MRIs this time with contrast, a lumbar puncture, and or anything else.
This makes – between last May and today – less than 12 months technically – 4 times I will have played the game of running through tests with a specialist to make sure I do not have a horrible, scary, or debilitating disease. The only good thing about fibromyalgia is that your body does not deteriorate.
Just once in my life, I’d like my body to be easy and show no signs of a scary disease – or have signs of something that’s simple and easy to fix. Breaking bell curves can be exhausting. I’m taking an academic article about MCAD to the neurologist appointment this afternoon.
*edit for more typos I missed in the first edit.