Well a lot has happened since I last posted. I still don’t have a diagnosis. I was admitted to the hospital after I emailed the disease expert a photo of my knees. I woke up one morning and they were both red and swollen looking- hot to the touch. For several days after, they felt like the knees of a 90 year old- burning and achy. That’s never happened before and I was worried that it meant I was about to flare up and potentially have another attack.
So the disease expert said to go to the hospital. He was traveling but said his fellows would admit me, which they did. I was there for 3 days while tons of doctors came into my room, asking me all sorts of questions. And not once listening to my entire medical story. I got poked and prodded and asked, “Can you feel this? Is this sore? Can you open your mouth and pull down your bottom lip?” It was weird.
One doctor came into my room alone and I finally asked, “Can we talk off the record?” He nodded yes. I threw out my best guesses regarding what this could be, and he said, “It’s pointing in that direction. But you need to be patient.” Then they discharged me.
To be honest, all my labs look pretty good (heck they should. I’ve always taken such great care of myself). My ANA which indicates an auto-immune disease came back at 40 on the dot. Usually if you have an AI disease, your numbers will be much higher. Mine is the lowest score you can have to even test positive.
Other than that, the hospital hasn’t found much. They gave me a referral to a neurologist and she’s the big kahuna in the field of neuro diseases. In terms of a referral, you can’t be seen by anyone more experienced than her. So we wait. She can’t fit me in until the end of September. But I phone each day asking if there has been any cancellations. My discharge orders said to be seen within 1-2 weeks. So this isn’t ideal. I need to see her sooner.
I reached out to another doctor and he ordered a bunch of brain MRI’s last Friday. I spent 1.5 hours laying in the tightest tube ever. It was an older model machine and they didn’t even have headsets (just ear plugs). At the last minute, that doctor ordered tons of extra views: specific nerves, optic nerves, brain stem and the entire brain itself. I’m glad he did it, but it was really hard to be in that machine for so long.
My newest symptom is my heartbeat. It’s racing for no reason and waking me up in the middle of the night. So I saw my primary doctor yesterday (and btw-she blows as a doctor and this is completely above her pay scale-I need a better GP). Anyways, I am now wearing a high tech heart monitoring device and she’s ordered another MRI, this time of my spine.
I’m hoping all of these tests will provide all the clues that the neurologist needs in order to make her diagnosis. But I have a feeling, there will be more tests which she orders.
I’ve lost a shitload of weight. All my shorts and jeans are baggy on me. I bought a new pair of jeans and shorts as an interim measure. I don’t like being this thin and want my more fit looking body back. But the scary thing is, I fit into skinny leg 26″ jeans and a size 0 short. I’m pretty certain I’ve never this thin. And that scares me because if I endure another attack, I can’t see my body doing well by losing another 15 lbs. I’m pushing food into me all day long but it’s like my body keeps losing weight. It’s as if whatever disease this is affects your metabolic rate.
Please continue to keep me in your prayers. It’s been the hardest two months of my life.