The last doctor I saw at the military hospital was a great guy. I’d already made the decision to switch to civilian providers, hoping for a different experience, but kept the appointment with him because I had noticed an alarming symptom. My pupils were different sizes and dilated rather unevenly, especially in dim light. A quick google search of headaches (which I had been having for awhile), coupled with uneven pupils does not yield promising answers. As he was going through the basics: checking eyes, ears, heart… He noticed my anisocoria (fancy term for uneven pupils) and sent me for an urgent CT scan of my head. I sat in the waiting room after the scan, sure that he was going to call me into his office with horrible news. Turned out, the scan was fine, aside from enlarged adenoids. He had no explanation for my pupils but recommended I see neurology for headaches and an eye doctor for the pupils. The optometrist said I needed glasses and when she went to dilate my eyes, only one pupil readily dilated. The other stayed small. She also recommended seeing a neurologist…
THE PUPILS IN QUESTION! Dun dun dunnn…
I called the next day to switch insurance plans. On the new one, I could no longer go back to the military hospital – I was full of hope that these civilian doctors were going to take me seriously and figure out what was wrong – right away. Wrong.
I’ll leave out ALL of the details but the next few months involved more appointments than I can count, referrals to almost every specialist that exists- with 2-4 month waits, a lot of ER visits, humiliation, tears, and wanting to give up. My new primary doctor, I think during my second visit with her, looked me in the eye and said, “I’m sorry, I can’t tell you if this is something that will kill you in two weeks or two years.” Wait, what?
There was a light though! My mom’s doctor in Arizona is part of a network of functional medicine doctors who are very knowledgeable about how all of the systems of the body work together. Fortunately there was a doctor from his network about 50 miles from where we live. My visit with her was amazing. She saw me for an hour and a half, addressed all of my issues, did a full physical, and came up with possible answers. ANSWERS. One of her first list of possibles was something called POTS – postural orthostatic tachycardia syndrome. A type of Dysautonomia. She also felt the thyroid nodules in my neck that no other doctor claimed they could feel. She used to be a neurologist prior to changing her practice focus and was concerned about the pupils – ugh, those things again. She contacted my primary and I’m not sure EXACTLY what she said, but suddenly my doctor was ordering urgent MRIs, MRAs, and neck ultrasounds.
Both came back with some abnormalities – my thyroid was enlarged and I had four nodules, two of which were 2cm each and suspicious enough for biopsies (this is still an ongoing issue I’ll probably blab about another time). My brain MRI also showed cerebellar tonsillar ectopia, also known as Chiari 1 Malformation. My neurologist said mine shouldn’t be big enough to cause problems but the more I’ve discovered from support groups and Chiari expert sites… Herniation size doesn’t always correlate with symptoms. So lo and behold, thyroid conditions, other hormone imbalances (also discovered by the good doctor), and Chiari can all be causes of Dysautonomia. I have also been diagnosed with Ehlers Danlos Hypermobility type by a rheumatologist (originally referred to for arthritis – I’m winning)… Which maybe you guessed… Is also a common cause of Dysautonomia! EDS Hypermobility is often seen in patients with Chiari as well. What a twisted web. As a side note, for some dark humor, I’ll add that I left the rheumatologist’s office with a hypermobility diagnosis, no explanation for the arthritis but YES – a referral to see mental health.
I’m having a hard time focusing on keeping this blog in order, like I intended to – but I didn’t start it 8 months ago so I don’t think it’s going to go as planned. For the past couple of days I’ve felt like crap. I was having a decent few days with lots of energy (as in – I got almost all of our grocery shopping done, man!), okay mood, and then BAM, I got hit with unbearable stomach pains Sunday night for several hours. It’s Tuesday as I finish this and the pain has continued to a lesser degree fortunately, but I’m feeling drained, have no appetite, and feel nauseous. Since your ANS controls gut motility and digestion, it could very well be the Dysautonomia acting up, or a bug, or who knows what else. I’ve experienced this before but not to this degree. I see my newest primary care doctor tomorrow morning about it. (I scared my old one out of the practice. Joking – maybe.)