It has been a long time since my last post and a lot has happened. The short version is that I have had more tests that you can possibly imagine – rounds and rounds of blood tests, CT scans, MRIs, Octreoscans, endoscopies, sleep studies, EEGs, EMGs, nerve conduction studies, appointments with various specialists (2 endocrinologists, 3 neurologists, 2 oncologists, 1 allergist, 1 gastroenterologist). And strange things keep happening but we don’t yet have any definitve answers. So, in essence, nothing has changed.
So, here are my current symptoms:
- Extreme flushing on occasion. This is MUCH worse if I don’t take antihistamines and so I take a combination of H1/H2 blockers day and night. I still have some breakthrough flushing but it isn’t all the time.
- The usual GI symptoms which are not any better or any worse.
- I am still smelling smoke but some new medications are helping with that.
- Partial seizures. These manifest in a number of ways (including the smoke smell), but I will give you an example. One night, M and I were sitting in bed and my right foot curled up completely, like I had a bad muscle cramp in my foot. But I had no pain. I could not uncurl my foot. This lasted a few minutes. In the morning, my foot didn’t work properly for a few hours and then I was fine. There are other signs I am having seizures in my sleep too.
- Raynaud’s phenomenon. When I am stressed, my toes turn purple/black. And sometimes, I now get these weird changes in color on my feet – one half of both feet will become snow white while the rest remains a normal color, with a straight line separating the colors. It is very strange, but there it is.
- I have patchy pins and needles in my limbs and hands, especially on the right hand side. My tongue and lower face usually has a pins and needles feeling as well.
- I am starting to lose a few words here and there.
Little Red Riding Hood has been leading the charge locally. The last set of tests I had were last week – EMGs and nerve conduction tests. The neurologist who did the tests was not a man of many words, but at the end of the first round of EMGs, on my lower limbs, he told me the results were basically normal. If you have never had an EMG, it is an interesting test. Small needles are put into various muscles. Electrical activity is measured when the muscle is at rest and then you have to contract the muscle with the needle in it to see what kind of electrical activity results (while the neurologist twists the needle like he is trying to tune an old fashioned radio). During the appointment for the upper body EMG, he did a physical first and discovered my triceps completely give out after applying resistance for a few seconds. He and I were both startled by this, although I had noticed my arms were getting very fatigued when washing my hair in the shower. But the EMG study of my upper limbs was “not very abnormal.”
Just as we were about to finish up, he asked me about other symptoms and so I told him about the numbness in my tongue and then added that the numbness was also around my lips and tongue. He stopped and gestured in a circle to his own lips and chin and said “Here?” When I confirmed he asked me to lay back down so he could do one more test. The next test was a nerve conduction blink test. In essence, a set of electrodes are put around both eyes and a nerve that runs through the eyebrow area is shocked repeated. As the neurologist was conducting this test he started getting very quiet. Then started asking me questions, like “what other tests have Red Riding Hood and Neurologist 2 ordered?” and “has anything ever happened to your brain?” after which we had a conversation about my pituitary surgery. Then he kept looking at the screen and intermittently administering shocks to my face.
When he took the electrodes off my face, I asked “so, how did I do?” He just said “I have to look at the results more closely. But there are abnormalities.”
Neurologist 2 (who I was referred to for these specific tests by Red Riding Hood) called me first thing the next morning. The results of the nerve conduction studies on my face appear to indicate a problem with my brainstem. She and the neuroradiologist had gone over my last MRI in detail together and did not see an abnormality, but the (many) MRIs of my brain on file didn’t really focus on the brainstem, so she ordered a special study of just the brainstem with lots of fine cuts. She also wanted to take a few nerve biopsies from my skin from various locations and is going to do that next week.
I also had some interesting lab results come back, thanks to Red Riding Hood who has become a NET expert this past year:
- My serotonin was LOW, less than 10 when the lower end of the reference range is 56. We are very unclear as to what is causing this but it is indeed strange.
- My prostaglandins on last check about 8 months ago were 1.4 times the top of the reference range. Now they are 2.5 times the top of the reference range.
Red Riding Hood is also a women of few words (my impression of neurologists so far is that they keep their cards close to their chests). I have asked her before what she thinks is going on, and she has simply said “I won’t know until we do more tests.” Since I have now seen her 4-5 times over the course of the past year, I am getting better at asking questions. On our last visit, I instead asked her “what is in the set of differential diagnoses for me?” She said she thinks it is a paraneoplastic syndrome from an occult cancer that we haven’t found yet/a NET. Which is what I think too.
My last CT scan at the NCI in August also showed a new hyper vascular lesion in my liver, but it was very tiny. Is that where it is? Or is it on my brainstem? Somewhere else? I really wish I knew so we could do something about it instead of what feels like waiting for whatever this is to get worse to a point of no return. I can live just fine without a parathyroid, part of my pituitary, and without my thymus. I need my brainstem.
Although my current symptoms are troubling, they are not disabling. I can still work and socialize and completely joy life free of limitations (except energy at times). But over the course of the year, things have definitely been progressing. What if the next progression is not so kind?
This feels so much like the first few years of being sick all over again. Strange symptoms slowly progressing until I get really sick and we finally find the tumor. Surgery, recovery, new strange symptoms, and start the process all over again. Some days, I get very discouraged and depressed about this. Most days, though, I remind myself that I have the ability to adapt and I can find a way to make this manageable. Being around positive and supportive people helps. Meditation helps. Just repeating to myself every morning: “I am not in pain, I can think and speak clearly, I can work hard, I can do everything I want to do” helps a lot. And the good thing about all of this is that I do have the luxury of really cherishing this time, right now, when I am spending quality time with my family, working on interesting projects with a team I love, making plans for the future with my husband. This time is so valuable, impending problems or not. But impending problems have been a great reminder of just how valuable this time is.
Next week is nerve biopsies and another MRI. In three weeks I am back at the NCI for another round of labs, CT scans and a PET scan. With the current clues in hand and more tests coming, I am hopeful we are close to catching tumor #4 before he does too much more damage.