i've gone for a long time without talking to anyone about my ms-related problems, mostly because i was mentally better if i just tried to forget about it. I'm over that, partly because i've been doing really well. I just have 2 things i want to ask about. My doctor doesn't seem to really listen when i ask about it, the attitude seeming to be "well you can walk and talk, what are you complaining about?". Anyway, the most important one is headaches. I've had a headache for it seems like a year. Exaggeration? A bit, but honestly i've had a headache more often than i have not. I clench my jaw constantly, i 'click' my throat, and my head feels like it's under pressure all the time. I have to consciously remind myself to breathe properly, and i only remember to do that when i'm sitting by myself and there's nothing else going on. I would take advil all the time, as it helps a lot, but here's the part that pisses me off: Quite a while ago the doctor offhandedly suggests advil, writes me a prescription for naproxen, and sends me on my way. I'm on rebif, and so am getting blood-work regularly to monitor my liver/kidneys etc..
So a few days ago i see him to get the results of the latest tests. He tells me that my liver has taken a bit of a hit. He assured me it's not serious, but *maybe too much advil*! I hardly take any, when i'd love to take it 3 times a day. I take 1 naproxen, mostly to regulate my temperature and help the flu-ish aches and pains if the rebif gives me a bad night. So this tells me that he hasn't really been listening. What are your feelings on the benefits and risks of advil or naproxen? I thought naproxen was better, but then i read that it is really bad for your stomach. The other one if constipation. I asked him at the same visit about it, and i've asked him about it a few times before. Always the same answer, not listening to me saying that i've tried his suggestions numerous times. This time i was asking him if any of the drugs i'm on could cause it (rebif, naproxen, statin, wellbutrin, glycon, lomotrigine, gliclazide). He didn't really answer, just said the same as always. Suppositories. Don't work. (at least i'm assuming that after trying for a week). Diet. He told me not to eat "fine fiber" because it would make it worse. I eat insanely well, 20 times better than pre-diagnosis, and i was never constipated and had maybe 2 headaches a year. My iron is down a bit too, i don't eat tons of red meat. But broccoli, apples, bananas, celery, bok choy, alpen (pretty fibre-y cereal), fish sometimes. I don't drink dairy, i use almond milk on my cereal. I eat about 4 tablespoons of butter in a month. I've stopped using vegetable oil. Olive oil sometimes if what i'm having won't work with coconut oil, which i use for everything else. I don't smoke. I have maybe 4 pints of beer in a month. And so on. Pretty healthy diet, and like i said, i never had headaches or constipation before.
So yes, i feel blessed that the rebif is working so well for me, and these aren't super serious things, but it makes me sleep too much, i never feel like going outside because the light hurts my head. I can't concentrate as well. etc.. I feel like since i'm not progressive, and the rebif is working so well, i'd like to live my life more, but don't feel like i can.
Can anybody else relate? And any suggestions?