More Than Just Numbers

Did I mention that I have a tremor in my hands now? I noticed it Friday night--it appears to be an intentional tremor, meaning that it happens when I go to do something. Um, wait, I do have a resting tremor, too. The intentional tremor is worse. Finely controlled movements with my fingers are difficult: when I try to adduct/abduct my pinky slowly, it trembles and jerks through the range of motion. Hopefully this is caused by the steroids and not evidence of worsening MS.

I wrote an email to my best friend, so I'll just post it here with slight modifications. Why reinvent the wheel?

By body is having kind of a rough time with the steroids. Turns out I'm on a high dose. The bishop's wife is a nurse, and she's gone on some doctor visits with me and checks with me to see how I'm doing. She asked what the dosage is... 60? 100?. Um, 1,000. Not once but five times. The bitter taste it causes sucks. It sticks around for like 10 hours and makes food taste spoiled. The steroids give me a headache sometimes and make me feel like I have the flu. Tired but can't sleep at night very well. That might just be the MS or stress, though. My ears hurt. Basically, I just feel like a pretty sick girl.

I got my period at about 4:00 am. File that under "figures."

Last night, my left eye started hurting. Kind of sharp. Not severe, but enough to keep me awake. Just hoping the steroids do their thing before I lose sight in that eye. It's the one with optic neuritis. Honestly, both of my eyes aren't great right now. I had difficulty reading music to play the piano today. I was trying to learn a piece of music for choir. It was hard to see which line the notes were on. That, along with the eye pain, made me scared to lose my vision, but then I was disappointed in myself for being afraid. I want to have faith.

I don't want to give the impression that things are only hard. I'm now a pro at the saline, medication, saline, heparin routine for doing my IV treatments. It's easy.

I have had a good weekend despite any troubles. And I'm hopeful that the steroids will work. I researched drug treatments and know what I definitely don't want and what I would be willing to try. I'm beginning an inflammation reducing diet and some other "alternative" medicine strategies. It's just hard to remain hopeful when new symptoms show up, like the eye stuff. 

Just as I was about to send this, I got a call from your brother Phil (her brother is a radiologist doing a fellowship in neuroradiology). He said phrases like this: periventricular white matter lesion near the right frontal horn--conspicuous absence near left frontal horn--asymmetricality. Lesions in subcortical white matter, periventricular area--distribution across space. Distribution across time not yet established--one MRI. Nothing enhancing with contrast.

So those are my Phil notes, and I am to question a neurologist who does not notice these details on his own. Those were things that Phil noted that were missed by the other radiologist. He did not note lesions on my spine, and neither had the other radiologist.

Phil's opinion is that the amount of scarring on my brain, while not excessive, is not normal in a person my age who is otherwise healthy. You might see it in the average 50-60 year old. You might see it in someone my age with severe kidney or vascular disease. That doesn't pertain to me. So it should be a red flag that something is wrong. Does it scream MS? No. It does call out MS, though, because although small, the lesions are in classic MS areas. And they are in different parts of my brain, which is part of the diagnostic criteria for MS. I don't have the other part of the diagnostic criteria, which is evidence of the lesions persisting or increasing over time. I've only had the one significant attack and the one MRI. The enhancing with contrast note is that the lesions didn't appear to be active at the time of the MRI. (This lends credence to what I've been reading about the role of Vitamin D--you have damage occurring but probably don't have an attack until your Vitamin D level drops. And "drop" for a person with MS appears to be within normal limits or slightly low compared with other people. My Vitamin D level needs to be double what others' need.)

So... Taking into account the images, my description of symptoms, and the finding of optic neuritis, MS is the most likely problem. Apparently optic neuritis is a key finding in the diagnosis. I guess that's why even Dr. Gabby didn't deny me treatment after that.

Phil is in favor of doctor shopping until I find someone who respects my autonomy and considers me a partner in determining treatment. He said that without knowing the fullness of the medical nuttiness I've encountered.

And he wanted to make sure I won't be on the steroids long term.

He wants to be apprised of my visit to the MS Center (he was polite enough to add only if I don't mind sharing or have enough energy). He feels that they will certainly have up-to-date opinions based on research and hopes that they will be willing to partner with me in determining a treatment plan. He advised me to send the MRI films, not just the reports that they requested. And he offered to listen and give advice any time I am unsure that my doctors are providing appropriate care.

I appreciate Phil's opinions, and I appreciate you suggesting that I contact him. I feel calmer since speaking with him (could be the totally unemotional manner with which he presented his findings ;). I think that although of course I don't want MS, I do want to be confident in the diagnosis. The diagnosis leads to the treatment, which is what I'm really interested in. My question is, "Now what the crap do I do?" Because of Dr. Gabby's vacillation and the total disagreement between neurologists, a tiny part of me still questioned the diagnosis. The way that Phil explained it made sense. Instead of just giving me an opinion, he told me how that opinion had been reached. He's nothing if not logical and thorough. :)

So that's what's up.