Saturday, January 3, 2009

When Good Neurologists Go Bad

*Author's Note: I want to answer D.R.'s question about Ritalin. I don't get anxious on Ritalin. I get anxious on Provigil, and being a person who has battled anxiety too much in this life, I try to avoid it at all costs. Out of all the horrible things out there to experience, anxiety has been the worst that I have had to go to combat against. It is a horrible thing and I envy those who have never had to go through it. I don't ever want to deal with panic attacks again and take my meds religiously to keep them away. If anything makes me feel anxious I ditch it immediately -- I hate that feeling with a loathing that I don't have words for.

Or maybe "When Neurologists Attack." How about "Neurologists Gone Wild" (though that it a scary thought, my neurologist being a trite old and... not so firm)? Take your pick, I've got more. I have been pondering this whole thing and keep thinking the same thing: "When Good Neurologists Go Bad," because my neurologist seems to have gone past her due date and needs to be put in the compost pile. Or maybe fed to the birds and squirrels, put out to pasture, made into preserves, sent to the glue factory... once again, take your pick because I have more.

I do not feel that my neurologist takes me seriously -- a subject she and I had a discussion about on my last visit to her. I was not accepting of her hee-ing and haw-ing on the subject and wanted some firm answers. I wanted to know if she actually listens to me and believes what I tell her, because her "findings" do not reflect what I report to her. She only became my neurologist because my last beloved neuro moved to Florida to care for a more populous clientele and the clinic that she practices in was the only place for me to get Tysabri, so she has only known me on Tysabri. I will freely admit that Tysabri has been a God send for me (and many others). It has wondrously slowed down my MS -- I have only had 1 clear-cut attack in the almost 2 years I have been on it. Granted, I've had new problems, but not a full on attack like the current one I'm in. I haven't gotten better, only held where I am, but that is enough for me. Before Tysabri I had, on average, 3-4 attacks a year. And my attacks last forever. One of the shortest ones was 6 weeks, and that was with the steroids. I never recover fully from my attacks and always have residuals left over from them. My old neurologist knew this and took this into consideration, hence why he was so adamant about my getting on Tysabri post haste when all the other meds we tried did not hold me adequately. My new neurologist must not have cracked into my records and has only seen me on Tysabri and concluded that I am a walking miracle whose MS is so miraculously under control that I can now solve world hunger. Whew! Glad she figured that out! On my last visit I asked her if she had read what my old neurologist said about me, what his findings were, what his opinion of my MS was, ANYTHING he had to say? She was evasive, but I was determined and pinned her down with my beady red eyes and wouldn't let her squirm out of answering me. After a long tug-of-war over the subject, she finally realized that I meant business, wanted some hard answers and was not going to budge until I got them. We had a nice long chat about what she had got out of his reports and what she did incorporate into her own records. To get rid of me, she told me that she does chart the things I tell her, that I know my own body best and know how MS really feels, nobody can tell me what my MS is doing to me better that me. Then, to flatter me, she told me that people with MS tend to be intelligent and more educated. I was slightly mollified, darn it all to heck! I wanted to march out of her office the self-righteous victor instead of pondering whether I am an intelligent, educated dumb ass.

So is there a point to all this? Why yes, there is, I'm so glad you asked! My fatigue kicks my round butt on a regular basis, it keeps me from accomplishing the things I want/need to do, and has made me have a love affair with the couch -- all things that I don't want. I tried Provigil and hated it. Even at the lowest dose, which I then broke in half, it made me feel sick and anxious -- 2 things I don't care to be.

Blindbeard: This fatigue is driving me nuts! Isn't there anything that will help?
Neuologist: We could try Provigil for that.
BB: We did and I can't tolerate Provigil. It makes me feel like I should have snorted it, shot it up, like I sucked d*ck in a dark alley for it.
N: We usually prescribe Provigil for fatigue.
BB: I've heard from other MSers that Ritalin works well.
N: We usually try to stick to Provigil for fatigue.
BB: Is someone playing a broken record in here?!

The good news is that my shrink is more open minded and not afraid to branch out from the whole Provigil-is-the-only-option mindset. She gave me a prescription for Ritalin without my asking for it (I had forgotten about it because I got nowhere with my neurologist about other options for fatigue). She suggested we try it because she knew that there are other things out there that will work for fatigue besides Provigil. I have been on the Ritalin for the last few days, maybe even a week, I can't remember, and I am LOVING it! I have not felt the need to make ass prints in the couch and have not been napping for hours on end. I even vacuumed the house and got my room cleaned up. The next day I was able to get the dishes caught up and change the cat boxes. I went grocery shopping and was still able to get a few things done around here. I feel almost normal and can't wait to see my neurologist again to tell her that I started on Ritalin. I want to see the look on her face when she hears I didn't need her Provigil and found something better.



"They" don't know everything...and neither do I. But when it's about my body, I'm pretty sure I'm closer to being an expert on the subject!

OK, speed freak...come clean MY house! LOL (Glad to hear you are feeling a bit better)

Linda D. in Seattle

Lisa Emrich said...

vacuuming cleaning, dishes, groceries, cat boxes..... OMG, come do me too!!

Also, yeah for the shrink!!

Jen said...

YAY! I admire your tenacity, Sista Sledge.

Lauren said...

Do me too? That sounded vaguely pornographic (giggling), just kidding.

Continued success on Tysabri, and good for you for sticking up for yourself!

Lauren ;)

Denver Refashionista said...

Almost makes me want Ritalin. Does it make you anxious at all?