I had my first follow-up six weeks after my diagnosis. I was sure my doctor was going to increase my medication after telling him about continuing to feel fatigued and staying in bed during waking hours while at home. My labs told him otherwise. He kept me on the same dose. I told him about the problem with my feet and legs, still thinking it was my circulation. So, he checked my circulation in my feet, which he said was fine. Well color me stumped. My doctor, too. My ANA levels were still elevated as well. Since, I had previously tested with abnormal levels and further testing for lupus were negative, I pushed for answers in hopes that it would lead to the cause of still feeling like crap all the time.
I was referred to a rheumatologist and neurologist for more tests. Fun. NOT! I tend to get more anxious when I have test after test run only to get met with negative results. Not only that, my doctor asked the neurologist for an EMG. The last EMG I had left me in tears and the inability to use the right side of my body for several hours. I was not looking forward to it.
I went in to the rheumatologist first and he discussed my labs my doctor sent over. The one thing he explained was that the elevated ANAs don’t always mean anything and that if anything, he’d expect to find ANAs for thyroid in further testing. I have to say that his whole demeanor in treating me like a person and not just another patient really put me at ease and reduced my anxiety. I was walked over to the lab for more blood work, which left me with another gigantic bruise. Oh joy. I went home and took it easy after that. I learned after my reaction to that first blood draw I mentioned in my last post to not do anything after.
My follow-up with him was a bit overwhelming. My labs did not show ANAs for thyroid like he expected. Instead, it showed ANAs for something quite different and I wasn’t showing any symptoms. I wish I could tell you what it was right now, but my memory sucks lately. I did come home and send a message to my doctor cousin letting her know right away. I think after I sent the message I forgot everything. If she’s reading this and happens to remember, maybe she’ll remind me. Anyway, that was the cause of my elevated ANAs. Mystery solved.
The visit with the neurologist was interesting. I went in expecting to have the EMG done that morning. I was wrong. So much for having other people schedule stuff for you. I did get to sit with the neurologist for a while, explain my symptoms, what I was feeling and answered his questions. He checked my feet and legs and discovered I had lost some feeling in my feet. Interesting. Lost feeling, yet it was still painful. I have to say that he put me at ease in the same manner as the rheumatologist. I left after scheduling another appointment for an EMG and an MRI and with orders for another blood draw to test for myasthenia gravis. Yes, another big bruise from the vampires.
I returned for the EMG with my husband in tow. Prepared to not be able to use whatever limb he tested. I explained to him my nervousness about the test, about needles, and about how painful my last one was. He kept me talking through the whole test to keep me at ease. While we were talking we discovered that he knew the neurologist that did my last test. Yes, I told him exactly what I thought about that neurologist. The results of the EMG amounted to nothing, the blood test was negative, and so was the MRI.
I had an overall good experience with the specialists, but I was feeling doomed at the end of it. It was April of 2009, and I wasn’t feeling any better.