More about the Neurology Appointment

So... Dr. Gabby is great and hilarious and brilliant. Hilarious in an absent-minded professor way. Her office looked like a paper tornado hit it. She had papers everywhere! All over her desk, shelves, chair, and exam table. And books, too. And junk from drug companies. I didn't mind, because it reminded me of the offices of some of my college professors. And I don't care about the way someone (or their office) looks as much as the way someone is.

And she is smart. All over the place, but smart. Just what I hoped for! I wasn't valuing social skills as much as intelligence, but she's nice, too. After she told me point blank that I have MS and I started crying, she gave me a hug and promised to take really good care of me and make me feel better.

Like I said, she read my films and spotted two classic MS lesions--that means areas where my immune system has destroyed a whole bunch of nerves. Enough that together they show up as a white spot on the MRI. Just a few damaged nerves here and there don't show up. Dr. Gabby could tell that my body has been working on this for a while.

Looking back, I've had at least two attacks that I know of.

A year and a half ago, I had cognitive issues (fogginess, confusion, forgetfulness) and was tired all the time. It lasted about a month. That was after my gallbladder surgery. It took me a month to heal (after they said two weeks max), and then the next month was maybe an MS exacerbation. Probably from the stress on my body.

Three years ago, I had weak muscles with poor stamina. Having to put the car into park at red lights because I couldn't maintain pressure on the brake pedal... that sort of thing. And sciatic nerve pain. I went to a chiropractor (WASTE OF TIME AND MONEY), and they used an electrical stim thing on my lower back. That made it worse. So bad that I was having trouble walking. And I was tired all the time. I remember that my chiropractor appointments were around 5:00 pm, and I would be ready to fall asleep as I was leaving. After I stopped going to the chiropractor, I slowly got better.

So I guess maybe those were MS exacerbations.

Back to the neurology appointment...

It was kind of a blur. I remember her checking the feeling in my feet. Having me track her finger with my eyes. Touch tool then nose then tool then nose. Stand with my eyes closed (I sway). Walk with my feet touching, heel toe heel toe. I was bad at that. Disappointing given my gymnastics background. I could walk on the balance beam with my eyes closed!

We talked about what MS is and how it works. We walked about the medicines and tests I'll need. We talked about how the medicines work.

Besides the lumbar puncture that I had today, I also need two more MRIs: cervical spine and thoracic spine, both with contrast. The ones I had last week were without contrast. Dr. Gabby said that I need both, but with contrast is the more important one, because that's where she'll see the lesions. But she warned that spinal lesions are more difficult to spot than brain ones, so even if I have them, they may not show up. I have an appointment for the MRIs on Tuesday.

And I need an evoked potentials test. Auditory, visual, and sensory, I believe. I'll have electrodes on my head to measure my brainwaves. I guess they'll measure my processing speed for various stimuli. I'm not worried about that one--I'm geekily looking forward to it. It will be on Wednesday.

On Thursday I'll see Dr. Gabby again to review all the test results and make plans. So far I know that I have to start taking Vitamin D because it does something for MS. Low Vitamin D can precipitate an exacerbation. (Amazing that I might have trouble thinking of the word spoon but can bust out a word like precipitate--word retrieval problems are truly random.) And I need to take a lot of B12, which helps nerves develop. I definitely wants some of that!

I will need to start taking a drug called ACTH, which I think is only while I'm in an exacerbation. Again, the visit was kind of a blur. I'm supposed to call and see if my insurance approves it (it's expensive, of course) and also set up a time to be trained on how to inject myself with it. Should be fun times.

And I will need to start taking at least one of the ABC drugs. They slow the progression of the disease. Sign me up.

And I will keep taking gabapentin and maybe increase my dose. OH, and I told Dr. Gabby how I went off Dr. Dummy Barry's directions to take 600 mg at night and instead have been taking 300 in the morning and 300 and night. She said that's perfect!

I think that's everything.

Oh my gosh. I'm soooo tired.