I had my annual neurologist visit this week. I totally kept my composure. I'm not sure if not having Shane there helped, or made it even more amazing that I did just fine. Anyway it was a very good visit and Dr.M was super understanding when I told him I didn't want to do the shots anymore. The last one left me with an itchy rash and I was running out of areas that are not full of scar tissue. He said someone with my frame would have trouble finding enough real estate and maybe I'd want to to try an intra-muscular one instead. Not really sure why he thought I'd have an easier time with that, although the once a week did sound good.
He said he'd basically work with me and find something I would be able to do, as long as it was something. He also said I could take the rest of the week off, which I had already started doing anyway. Then he brought up some other options- Tsyabri, a once a month infusion, but a few people on it have died of a brain infection. So maybe not that one. Or the Avonex once weekly in the muscle, not too sure of that, the needles are like two inches long and would probably go right through my arm. Finally, he brought up a new study being done using one of three doses of fingolimod or a placebo. With three doses, I'd have a 75% chance of being on it. The great thing about it is that it is a pill. I was kind of - actually very- interested. And as it was the second study, so they already know all the possible side effects and monitor you very closely.
He gave me an information packet on it and I was excited to get home and research it. Unfortunately, although it is extremely effective, is has some moderate-extreme side effects. You have to be seen pretty often so they can check for melinoma- which so far is usually benign. Upper respritory infections are very common. And as it sequesters your white blood cells in your lymph nodes, you have to be careful about being around sick people. Especially chicken pox. I guess a couple people died, and somehow it involved chicken pox. I had chicken pox so I think I'd be ok.
But reading over the criteria for being accepted into the study I found that they insist you are post-menopausal or you've been neutered or are on the pill. All of which rule me out.
It sounded so attractive at first. 3 months no drugs- to cleanse the system. Then 6 months of pills. And maybe some extra if they extend the study and you want to take the drug for certain. And you haven't died of herpes.
Knowing I can't take it makes me feel better about not worrying about lots of side effects. Just my liver doesn't seem so bad- which is doing well by the way. And it was fun to dream for a day or two- I'm a slow reader and there were lots of papers.
So in the end we worked out how I could "stick" with what I'm already on and I guess I'm feeling better about that now. Maybe it was good for me to hear the other options and make me feel like what I've got isn't so bad. I put some cortisone on the itchy spot and I think it may be helping.
I did mention to him a funny feeling I've been getting when I swallow for the past few months and he thought it might be worth while to get a swallow evaluation. So when I got home I scheduled one for later in the week. I figured why not? I'm not choking or anything but it wouldn't hurt. Secretly I hoped they would find my thyroid was not quite right and could give me a pill and my hair would stop falling out. And I'd get a new pair of shoes just for being a good patient.
Well, I did get some applesauce, and yummy diced peaches , and graham crackers. And a skittle that I had to just swallow like a pill so it didn't even matter if I picked the lemon one. Oh, and my thyroid was not the issue. Rats! It seems to be the muscles the right side of my throat.
But she did have some fascinating information for me and I found the diagnostic process interesting too. she gave me a range ot things to eat or drink, with varrying textures and viscosities. After watching me ingest, and feeling my thryoid and all that she had me look out the window while I ate applesause. It felt normal. I looked to my left, still felt strange. I looked down, very odd way to swallow. Still felt strange. She explained it like this: the muscles on the right side are being sluggish. When I turn my head to the right, it pulls and forces the left side to do the work. I thougth it was really cool and was experimenting all through dinner that night. But Shane knew what I was doing so he didn't think I was too weird.
She also explained that both ends of the eating spectrum are problematic. The crackers, popcorn, etc because of their dry and rough texture. And water, because it slips down too quickly. She said it is because it is tasteless, textureless, and especially if it is room temperature, it sends no signals to the brain to prep it for swallowing. I was really excited. It explained why I could down an entire Snapple Lemon Iced Tea without stopping but felt like I was being drowned if I tried to guzzle 6 oz of water. -It also explained why they put thickeners in everything my mom drank after her stroke. She was so disappointed when she took the lid off her coffee only to find it syrupy. (we snuck down to Starbucks and brought her back some real stuff. She had already had the swallow evaluation and had passed, so it seemed silly to us to make her drink gross coffee, not to mention mean).
So, although it was not the best news, it was educational, and tasty. And now that I know why it feels funny, I'd like to know if the Doctor thinks there is new activity and the Rebif is not working so I can just stop it all together. But after reading these articles, I am inclined to think they might be on the wrong track intirely and why risk more bumps and bruises and possibly liver health , for something that is not adressing the root cause, which it seems they are not entirely sure of. I wish I had read the articles before my appointment. Dr. M is very nice and doesn't act like he thinks I'm crazy when I preface things with "So, I was reading on the internet..." I'd like to think its because I bring up valid and pertinent information that warrants a serious considering. And not just that he is so nice.
He once told me "It's a really exciting time to have MS!" I can't say I shared his sentiment completely in the same way. I did like the fact that he was so passionate about his area of expertise. It does seem like a lot of new puzzle pieces are being discovered lately. And I do like puzzles. I wouldn't mind some new shoes too.
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