Here is a perk of having a mother who works on the academic side of healthcare. When your first neurologist is a let-down, she can ask for recommendations and get real answers.
I didn’t choose my original neurologist. I wanted to get the earliest appointment possible, so I scheduled with the first available person. When I read her bio online, I was glad that it said she enjoyed confusing cases. Given the as-yet-unresolved nature of my progressive numbness, that’s what I wanted to hear!
At my first appointment with her, I lost some of that faith. She saw that I had recently started taking a B12 supplement, and said this could all be explained by a B12 deficiency. I find it hard to believe that a B12 deficiency would suddenly develop at the same exact time as my injuries. (And I’m not deficient in B12. It’s just low.) But she ordered tests, and I felt sure that the results would prove her wrong.
On February 18, I had the MRI of my brain, ordered to rule out MS. And some other MRIs, because getting imaging tests is what I do with my life now. That was a Monday. I didn’t hear anything back, so I assumed all was normal. I went about my life. That Friday, Feb 22, I had an appointment with my spine specialist. He is the one who told me about my abnormal MRI, if you recall.
He wondered why no one had called me. So did I, but I had other appointments with other doctors, so it’s not like I was up in arms about it. I assumed the MRI would be a fluke, everything would be fine, so I didn’t make a big deal. Then I went to my new pain doctor, and she also mentioned the brain MRI. Then I went to my PCP. She ordered a pituitary-specific MRI, as well as some blood tests. I read up on pituitary tumors, but thought, That’s ridiculous. Nothing that’s wrong with me is ever something REALLY wrong. I mean, I have three herniated discs, but none of them are bad enough for surgery.
Then I got the results of the second brain MRI. There actually is something there. It’s either a Rathke’s cleft cyst, or a microadenoma with blood products (whatever that means). I’ve had so many blood tests in the last two weeks that I know which nurses are bad at it, and I can feel my veins having panic attacks when they come toward me. My PCP told me to follow up with my neurologist.
My neurologist, of course, STILL had not called me. I guess she was planning to glance at my test results five minutes before my next follow-up appointment (which, by the way, she had scheduled for MAY). There was a whole kerfluffle wherein I cancelled my follow-up with her, explained exactly why, and then got a bunch of half-apologetic, half-”you’re so hard to get in touch with” voicemails in response. Suffice to say, you couldn’t pay me to go back to that doctor. I know I am lucky to even be able to make this decision, so it’s not one I make lightly.
My insurance company has a great website, which even allows me to view the reports from test results online, but they haven’t revamped the “Doctor search” function in quite some time. If I could pay $5 per month and search only for online dating matches with a certain body type, my healthcare premiums should buy me the ability to search by sub-specialty or unofficial “patients they see a lot of.”
This is where my mom’s profession comes in handy. Her awesome boss sent a few emails and was able to refer me to a doctor who has a lot of experience in this area. I’m glad I won’t have to be stuck with a doctor who can’t even look at test results. I do have to wait until the beginning of April for my appointment. That seems like a loooong time when I’m waiting for something like this. But, new neurologist! Yay!
Don’t worry about me, though. I’ll find a way to occupy myself. For instance, I’ve already got a new physical therapy appointment next week, and a pain doc follow-up after that. Oh, and I registered for a one-mile open water swim, which takes place at the end of June. So. I hope I don’t have to have brain surgery.