Wow! What a long day of testing. I'm tuckered out. We missed my CT scan of my chest, abdomen, and pelvis, scheduled for 7AM, but we were able to get it rescheduled for 2:00. We got a call from the neurologist's assistant requesting that we get yet another EEG while we are here, so that means that we will be here until Friday.
The day started off with some labs and they wouldn't access my port, so I had to have multiple sticks in my arm in attempt to get a 24 gauge needle (the smallest needle they make) into my arm. Completely defeating the purpose of having a port, but whatever. Not fun, but they got blood for folate levels, GAD65 levels (for the third time), thyroid function tests (for at least the third time), and a few more.
Afterwards, my mom and I did some retail therapy in the clinic gift shop. We got sweatshirts for everyone in the family, a really cool coloring book with some awesome colored pencils, a pencil sharper, and some jewelry. Mayo even has a place where you can store your retail therapy purchases while you attend appointments and tests! Isn't that awesome?! This hospital is pretty incredible. I've never been in a hospital like it.
Next up was the autonomic reflex test. It was a two part study. The first was to prove I have CRPS. That's a joke. We already know I do. Not to mention I have had that test (QSART) two times already and they were both grossly abnormal. Again, whatever. The second part was a tilt table test, something I have never had done before, but I have needed it for years. The cardiologist at Children's in Pittsburgh refused to write for it because my heart rate only increased by 28 beats on standing instead of 30+. Semantics considering I had all the symptoms of POTS (postural orthostatic tachycardia syndrome). Anyway, this test made me symptomatic, so we will definitely be getting some good information from that portion of the test. Finally someone had the guts to write for it!
After that, we headed down to the cafeteria to grab some lunch. I had some delicious meat lasagna with mashed potatoes, vanilla pudding, and gluten free cookies. We sat with some wonderful folks that validated my feelings of frustration over repeating tests constantly. They too experienced the same thing. The one woman was misdiagnosed and treated for melanoma *the deadliest form of skin cancer* for TEN YEARS, before coming to the Mayo Clinic, where she was diagnosed with squamous cell carcinoma (a much more benign cancer). Her advice was definitely something I needed to hear. From someone who just gets it.
Then, we hurried up to the Movement Disorders Lab, where I had an EMG-like muscle response test. Instead of using needles, they used electrodes, which I was so thankful for. My CRPS affected legs were not in the mood to be repeatedly stuck with needles (especially because it is rainy in MN today, which exacerbates chronic pain symptoms). Then, they did a startle test (which a positive result is fairly classic for SPS) and indeed, the startle test made my muscles spasms uncontrollably for several minutes. Afterwards, they shocked the bottom of my feet repeatedly to create muscle spasms. That was incredibly painful and that's saying a lot coming from me.
Next, we rushed down to radiology to get a CT scan of my chest, abdomen, and pelvis. I'm not really sure why the doctor ordered these, but I think it is because he wanted to make sure that there aren't any cancerous tumors anywhere, as patients with SPS are at a higher risk for cancers. This was a fasting test (which no one told me about) and I needed IV contrast. Once again, they refused to access my port, so they stuck me multiple times to get an IV (in turn causing a CRPS flare in my left arm. Lovely and again, defeating the point of the port), The CT scan was uneventful and I am not expecting anything to show on the scans.
Finally, we reached the end of our day. More appointments tomorrow and Tuesday, and some testing on Friday. Friday night, we will fly back to Baltimore, my parents will switch and my dad will fly back to MN with me on Monday for Tuesday's appointment. We will likely fly home Wednesday. That's the tentative plan for now.
That's all for today! Check back tomorrow for updates on what the SPS neurologist has to say after all my testing comes back!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!