I am writing this blog to share my experience as a formerly healthy person who gets a rare disease, my struggle to get diagnosed and get better and the crap that follows. In addition to helping me cope with my current reality, I hope it helps some of you that are in the same boat to feel a little less lonely and crazy as you make your way through this process too. If you want to read from the beginning, start here.
Fortunately or unfortunately – I am not sure where to file this one – it does not appear I have Cushing’s at the moment. What I do have is an unusual collection of symptoms and images that, yet again, no one really seems to know what to do with.
Here is what I do know.
The latest imaging of my MRI shows what was called either a new pituitary tumor “beneath the sella” (which means below the bony little cup the pituitary gland sits in) or post-operative changes. The “thing,” whatever it is, is not small – if a tumor, it is almost the size of what is left of my entire pituitary gland. I have consulted the Wizard and he sees what the radiologist is looking at but doesn’t think it is a pituitary tumor. Radiology disagrees and thinks it is a tumor. It’s sort of an odd place for a pituitary tumor. But at the same time, if it is not a pituitary tumor, why would I be getting these postoperative changes now, four years after surgery, when my MRI has been completely stable until now? Nobody knows. The plan at the moment, locally, is to redo the MRI in another three months and see what’s in there. I have other ideas of scans we could do to try and sort out whether this is a tumor or not while we wait, but I am also trying to pick my battles carefully with the insurance company and my doctors and so am going to just try and be patient for now.
The MRI and the “feeling like garbage” led to the battery of tests I spent most of May working my way through. It looked like an early scene from “Breaking Bad” in our bathroom. I have collected more saliva, blood, and urine than the Russian Olympic team this month. And all my tests were negative too – maybe we use the same equipment? My pituitary function looks much the way it has for the last few years. I was a little hypothyroid, but fixing that has not changed any of my symptoms. And besides some minor irregularities in my labs (my ALP is starting to climb again, which was the first lab to climb out of the normal range last time) nothing is really showing up in the test results.
In the meantime, I have developed wicked hypertension again, despite already being on BP medication. My seizures have only been controlled with higher and higher doses of medication. I am completely exhausted. Some days, I feel feverish and have pain in my bones and muscles like you do when you get the flu. I have also started to develop some pain in the left side of my abdomen. If you press on the “right” spot, wow does it hurt. But so far, none of my labs are screaming “SPLEEN!” or “PANCREAS!” or “STOMACH!” or anything else that would point us in a clear direction. I am scheduled for a CT scan next week to get a better look. The symptom of the week, no word of a lie, is dizzy spells that are provoked by simply moving my eyeballs from side to side. I am getting reluctant to even bring some of this stuff up because of what might get written in my chart.
Slowly but surely, we are starting to look into these new symptoms as they arise. I am a little suspicious some of my issues might be autoimmune in nature, so while I wait for appointments and results to come back, I have started following the Autoimmune Protocol to see if there is anything in my diet that could be the cause of some of these issues (if you Google Autoimmune Protocol and don’t whisper “Christ Almighty” after finding out what you can – and can’t – eat on this thing, you are a better person than me).
I am meditating, trying to enjoy spring, sitting/napping outside in the nice weather, having a positive attitude, making the most of the day, all those good things. Most days, I know all of this helps. I am still having some bad days and down moments but it really is amazing how changing your perspective can change your experience. So that is what I am going to try and keep doing.