I don’t have much to say tonight except that I saw the neurologist today and confirmed the diagnosis for MS. The BAER test showed irregularities and the spinal tap showed evidences of MS disease activity. That’s three diagnostic tests that point to MS (these plus the initial MRI brain scans showing five lesions).

Somehow, this time I’m not taking it hard this time. I guess I already shed my tears with the initial diagnosis a couple months ago.

I feel fine; some minor tingling in my legs and constant ringing in my ears but otherwise fine. The spinal tap pain is almost all behind me; I still feel weirdness in my lower back from the blood patch but I otherwise feel fine.

I now need to prepare myself for continuous therapy. MS therapy comes in injection form—stabbing myself with a needle regularly. Fortunately, there are prescription pills coming out in the next year that will replace the injections. My neurologist tells me not to wait for it, which I won’t. I’m just glad that it’s coming.

I can cope with this new knowledge that MS has been confirmed, but two things about it scare me significantly: serious physical disability (especially in my hands, eyes, and internal organs such as digestive system and bladder) and cognitive disability (failure of the mind and memory) to any extent. None of these are affected so far at all, thank goodness. My hands, eyes, and mind are my primary tools for my career track and what I use for my free time (which is the same as what I do for my work time – computing!!) so if I get crippled in any of these areas I will have to find something else to do with my time and abandon what I’ve invested all of my adulthood into.

But let’s not go there any further; I feel fine, and I’m still in the game, still as capable as ever. Hopefully the treatments will keep things this way for a very long time.

Well it’s almost midnight, Sunday evening. My mother’s here, I flew her here to assist me in a lumbar puncture (a “spinal tap”) that was scheduled by my neurologist as a final diagnostic in determining potential MS (and I’m betting it’ll turn up negative like everything else since the positive MRI). I’ve had more than a month to prepare for this procedure, but having never experienced it before I wasn’t sure what to expect.

Friday was the procedure. They had me lying face-down on a bed / table while they poked holes into my back. Yes, plural, HOLES! First they jabbed my spinal cord and I moaned and grunted and, well, didn’t hold very still, so they pulled the needle out. I thought it was still in there because I had difficulty breathing, the pain in my spine was still so strong it knocked my breath out, and the medical students standing around were asking me questions, “So what symptoms were you experiencing that led to a diagnosis of potential MS?”

“Well,” I stammered between awkward breaths, “for about two weeks back in April, .. every time I inhaled deeply .. such as if I yawned or stood up and sighed .. I had these weird 15 or 20 second spells .. first I’d get really tingly in my chest and neck .. then the left side of my face would cringe up like this .. and then I’d kind of black out .. only it wasn’t like I was blacking out like fainting .. it was more like I was just losing it .. and I just couldn’t focus ..”

Then the doctor came back and told me that he was going to try again. Try again?! I couldn’t even breathe right and there wasn’t even a needle in me? Ack!!

So then he did it again. Poke poke! Ow ow! “Get me an even smaller needle.” What? AGAIN?! Poke poke! Ow ow!!! Pokey pokey poke poke!  *sigh* Poke poke pokey poke!! .. Poke poke poke!!

“We got it!”

“Oh. So .. what does that mean?”

“Well, .. it means we’re going to sit here and let this drip out for a few minutes.”

“Oh.”

Five minutes later, ..

“So what now, another five minutes?”

“Yeah well probably not quite that long. Actually ..” He yanks it out and slaps on a band-aid. “We’re done. We got only about two teaspoons.”

They wheeled me into the recovery room and brought me a huge lunch but told me to eat with my head flat on the bed. Fine. I ate head-down. It was awkward. I also drank from my side. Water. Tea. And before the procedure I had a bunch of coffee. And a big huge bottle of Mountain Dew. So one hour into recovery, I really needed to pee. I called the nurse with the button. “Is it too soon? I really need to use the rest room.” “Not till 2:30. I’ll go get you a urinal.” She came back with a pee bottle. Great. I was scared of it, but I was really uncomfortable. I rolled to my side and I think I deposited at least two liters of pee.

By the time I left I only felt soreness in my back where they had poked at me. No headaches. I said that I was surprised by no headaches. “Surprised?!” the nurse exclaimed, “Headaches are complications of the procedure.” “Oh.”

Well I stayed flat on the sofa like I was ordered by my neurologist, and slept like a baby in my bed that night. The next morning, on Saturday, as I awoke in bed I felt fresh, energized, and, well, perfect. I felt perfect. I got out of bed, used the rest room, wandered into the kitchen to get some breakfast, and then I noticed that I didn’t feel so perfect anymore. By the time I ate I realized that I’d likely be stuck flat on the sofa for the entire day, as the spinal headache of being upright wasn’t fun.

Fast forward to now. The headache hasn’t gotten any better, and I've experienced a lot of nausea and serious hearing impairment. This whole time I’ve been cramming caffeine into my body and even used Imitrex (migraine medication, which I had acquired a bit of half a year prior for migraine treatment). Ultimately, the only way I have been able to cope has been to stay laying head-down, flat on the sofa.

As I type this I am actually sitting upright, but not without a lot of pain, in fact my left ear is almost entirely deaf from the pressure imbalances. And I’m sad. I’m sad because my mother came all the way down here to assist me in all this, officially, but unofficially I really wanted to enjoy her being here and go out and enjoy Scottsdale with her, but she’s had to hang around the house the whole time for the most part while I’ve been watching TV sideways for two and a half days straight.

And, I’m sad because when I’m lying head-down I feel fine, but that’s such a useless position, I can’t even use my laptop in that position. And if I sit up the headaches come back. So I can’t even work from home. I can’t do *anything*, except watch TV sideways, which inevitably contributes to my headache because I get headaches when watching TV sideways regardless of availability of cerebral-spinal fluids.

It’s been more than 48 hours. They say that if these headaches last beyond 48 hours you should call the doc, and then you get to go back in for a “blood patch”, where they inject your own blood to the problem area to help it clot. *sigh* I have to miss a work day for this, after already losing Friday!  Tomorrow I will wake up, confirm the headache remains, send an e-mail to the team at the office that I won’t make it in (sick day), and call the hospital and/or my neurologist to arrange for a blood patch. Then I’ll go in, do the deed, come back home and lie around for the rest of the day again, and then in the morning I have to drive my mother out to the airport. Well at least her schedule was perfect, she was here to see me through all this crap.

But I’ve been wondering this whole time, why on earth didn’t they just do a blood patch during the same procedure after THREE (3!!) heavy pokes at my spinal cord??