I saw the neurologist two weeks ago.
I was given a detailed form to fill out and then he admitted me into his office, flipping through the paper work.
“So, you think you have intracranial hypertension? What makes you think that?”
I described my symptoms, including the optic nerve swelling. He shone a light in my eyes.
“Yep, that’s papilledema all right. Okay, and how long have these symptoms been going on?” he said, glancing idly through the next few pages of my forms.
“Well… my eyes turned red on May 21st, and the headache and dizziness came a few days later.”
“Uh huh.” He asked a few more routine questions, and then I brought up the jaundice. He looked confused. “Jaundice?”
I guess he hadn’t read my referral from the internal medicine specialist very carefully.
“Yes,” I said patiently. “I had jaundice originally. And a rash. And lower back pain. And the my toenails fell off.”
The look on his face was priceless.
“Your TOENAILS FELL OFF?” He whirled around in his chair, stared at me, looked at PH for confirmation, and then whirled back to his computer and started looking through my bloodwork. “Okay, wait. Start from the beginning.”
Half an hour later he let me go, promising an MRI and a referral to an infectious disease specialist to try and figure out what the hell I had. He was the first doctor to actually take into consideration that I work with animals, and he wanted the ID to help rule out weird zoontic diseases.
I saw the infectious disease specialist today, which was less amusing. She was politely interested, and she gave me a requisition for some bloodwork to test for leptospirosis (looks like the original test that I requested was never actually done. She called the Center for Disease Control herself), lyme disease, brucella, q-fever… animal-related diseases. Considering I have had two people message me and point out that my symptoms match lyme disease, I think it was a good call. Although I haven’t had a tick on me since I was 15.
My MRI is scheduled for next week. We’ll see what it says.
Sometimes I feel like all these tests are pointless. Those are the times when I feel better. The visual disturbances are less than they were. I have no dizziness and only rare headaches. It does seem to be getting better slowly.
But then there are days like last Sunday, when my vision was so bad that I couldn’t read, couldn’t even really SEE. I could hear my pulse in my ears for the first time in over a week, and my head hurt badly enough that I took several extra strength Advil. The next couple of days I had continued bad visual disturbances and headaches. It seems to be settling out again, though.
At least people are finally starting to take me seriously. I could kiss that opthamologist.
At least they seem to be making some kind of progress. x
Grace Goldragon said:
I gotta say, your story makes me really thankful for my family doctor. She loves documentation, so anything she can swab, she’ll swab, any tests that are relevant, she will order. When I went in and said, “I think I have mono,” even though she said that was highly unlikely, and she herself thought it was strep, she still sent me for a blood test anyway, just to see. And you know what? I totally had mono!
I hope you get some answers at the end of all this.
It’s been a long and difficult road so far, but quitting is simply not an option! It’s beyond frustrating that so many doctors seem to be so clueless or (what’s even worse) disinterested! I sincerely hope you find an answer soon. Meanwhile, know that you are loved and admired! I will keep praying for your full and speedy recovery. All my love and best wishes. xoxo
I’m glad that a bit more seems to be getting done, and also that you feel rather better (on the whole), but it all must be frustratingly slow. Hang in there xx
ai yi yi – are you feeling better?? what an awful road you’ve been on .