So, I called in this morning and was able to get in to see my neurologist. He was really concerned about my symptoms, and suggested three things:
1) Another 5-day week of 1 gram Solu Medrol infusions given over 1 hour at the hospital, followed by a 30 day taper of oral prednisone
2) More MRIs - brain with and without, and cervical spine.
More accurately, he said, "I really want you to consider Tysabri." To which I replied, "I'm so glad you said that!" He gave me the forms they have to fill out and fax to the TOUCH people, and told me to look them over during the week. I always have a follow up appointment with him the next week and he'll prescribe it to me then and get things going. I have to be off the Copaxone for four weeks before I can have my first Tysabri infusion, so it'll be awhile before anything actually happens, but I feel good about it.
My first day at the hospital went well, by the way. This hospital is normally a little screwy, but during the last week of Solu Medrol it went pretty smoothly, and I think it may do again. I always have a midline catheter put in to deliver the infusion into my arm, and the gentleman who does it these days is always a delight. I have absolutely no fear of needles, injections, blood withdrawals, or anything pokey or sticky related. I'm actually only ever scared if I can't see what's going on, meaning I must watch the needle going in and I must not be told to look away. The midline's a bloody little affair, with a big needle, and I was happy as a clam. And, you know, I was going to get medicine, so I was happy about that too.
The IV machines are age old and frequently backprime or get air in the lines, and they beep all day. It's funny because they always tell me to keep my arm straight and don't move, but most of the time when I'm there, I'm suffering from spasticity and straightening out - and keeping perfectly still - are painful. I've had nurses grab my arm and hold it sometimes, which is reprehensible, hence "a little screwy." (They've done worse, but I'll save it for another day.) Anyway, the funny part is, sometimes I sleep all curled up and it never beeps once - and some days, when I deliberately hold my arm straight, it beeps nearly ten times over the hour. It's ridiculous.
So the first good sign for this week was that it only beeped once - right after the solution had been hooked into the IV machine and the nurse was still in the room, so she could see that nothing was out of the ordinary. The machine was just being contrary. So, yeah, things are looking good at the hospital lately. Good, but curious.
Another curious thing I noticed (though not necessarily good) since going I'm to the doctor so very much is the absolute unreliability - no, the fickleness of scales. Now, I've never owned a scale you buy for the home. First of all, I've never had use for one, and secondly, if I did want to know my weight, chances were I would be at a doctor's office at some point and some nurse would get to heckle me about it. (I was sick growing up a lot too, and I've always been fat.) I always trusted the results, just like I was naive enough to trust some doctors I shouldn't have when I was younger, because - duh! - the scales are in medical facilities! And who couldn't trust them?
But I don't trust stupid doctors anymore, and now I can't even trust a good doctor's scale. I've always known there were differences between scales, but get this: At my neurologist's today, I got weighed (at my request) on one of those rickety "climb up on the wobbly metal platform, let someone slide something around until it sorta balances, then try to hop off without tripping" kinds of scales. I weighed in at 248lbs at his office. I think I gained about 5-10lbs since my last visit at my GP's, but it's natural being on steroids. It's also a lot closer to what I feel is my "normal" weight. During the last exacerbation, I felt like a ghost, and I was about 235-240lbs, where I use to rest happily around 250lbs - and haven't since my weight started buoying because of MS, dysesthesia, steroids, and all that other stuff. Just more proof that everyone's "normal" weight is different.
Still, I still feel ghost-like, even after being told my weight's nearly back to normal. So in comes the second scale...
When I got to the hospital, they had to weigh me there exactly for the infusion, in metric this time. The CMA brought in one of those big, wide platform scales with an electric meter that can weigh you in kilograms or pounds - serious business. They're also a lot easier to stand on, too, and have things to hold onto to get yourself into a good standing position. (Why my neuro, considering his patients, has nothing like this and no grips for people to hold onto is beyond me.) Anyway, on this scale, I weighed 241lbs. That's a 7lb difference! That kind of difference might make someone less sanguine about what they weigh totally freak out. I'm glad I'm not that kind of girl - about 99% of the time, anyway.
Oh, we interrupt this rant to bring you this news: Not that it would have either surprised me or broken my spirit, but I wasn't harrassed by anyone operating any of the scales, by the way. Again, I'm done with putting up with stupid doctors and nurses and their additional "fat kills" BS, but I'm glad I don't have to face it on a regular basis. Especially when I'm exacerbating.
So today I'm going with the latter weight reading. It's not because it's the smaller of the two - it's because the technology for the latter scale is obviously superior to my neuro's piece of crap scale. And I still don't feel "normal" in my body, so I'm going to listen to what it's saying and conclude that I'm probably 241lbs instead of 248. It has nothing to do with those zomg 7lbs ruining my day or my life. It just feels right to me.
And... that was my day. Doctor, hospital, midline, Tysabri talk, and dueling weight readings. Doesn't that sound like fun?
Yeah, I know it doesn't. Humor me a little; I'm sick.