Friday, February 6, 2009

Update on stuff...

I've been on the Copaxone a little over a week now. Overall, I'm doing really well on it! Much to my shock (pleasantly so), you can't even feel the needle. Honestly, it's so teeny tiny thin you can't feel it enter the skin at all. In fact I've actually scratched my skin with it by dragging it accidently, and not even realized it'd touched my skin until I look down and see the bleeding scratch.

Now, it does definitely hurt a bit as soon as the plunger is pushed and it starts going under the skin. That is actually the only side effects I have so far- at the injection site. And boy, that does smart a bit. It burns and itches really bad, and the entire injection area turns fire red. Within five minutes, there's a spot about the size of a hard ball that is all red, with lump about the size of a silver dollar in the middle of it. Thankfully, that usually subsides dramatically within about two hours. By the next day, the lump is maybe the size of a pea, by the third day, gone completely.

Overall, I can't complain. The side effects are so minimal- especially compared to some of the common side effects with other MS drugs. At least this doesn't leave me feeling all sick and flu like for days. I can deal with a little discomfort at the injection site. And really, I look at like this: If a red blotch and burning itchy welt is going to make the difference between walking into my son's graduation ceremony and being wheeled into it a decade from now, I'll take the burning welt. It's a very small price to pay to maintain my quality of life and stall this disease.

I went back to my neurologist today, she's very happy with how well I'm tolerating the Copaxone. I talked to her about the pain I've been having under my rib cage and right hip, and she immediately said it's muscle spasticity caused by the MS. I told her my primary care doc had given me Darvocet but it didn't do jack, and that I'd gotten muscle relaxers from Joe that helped dramatically. She said more than half of all MS patients need them daily, and she gave me a prescription for one called Baclofen. I'd never heard of it, but she said it's very good for MS patients and has minimal drowsiness compared to most others. She also said that for some unknown reason, it's usually worst at night, which was also reassuring because that is when I seem to have the most issues. So, I'm starting on a low dose of that daily, and if I still have issues she'll increase it next visit.

We talked some more about the possibility of having Lupus, too. She said that's actually the biggest reason she wants me to go see the MS specialist at Wayne State this month. What bothers her isn't so much the blood test, it's the fact the antibodies for Lupus showed up in my spinal fluid. She said while she's 100% certain I have MS, she's not sure about the Lupus. It could be a false positive, it could be the MS mimicing Lupus. So, she wants to send to me to someone that can make a definite diagnosis either way. She said it's too critical to know whether or not I have both to risk guessing- and guess wrong. If I do have Lupus as well, that will effect how aggressively she treats my MS, and they'll have to monitor my liver and kidney fuctions very closely to make sure the meds aren't causing issues there.

It bothers me she's so worried that I may have Lupus, but at the same time, it's reassuring that she isn't risking my health by doing all she can to make sure we get an accurate diagnosis either way. I've met too many doctors that seem to fancy themselves infalable demi-gods, thankfully she definitely is not like that all. I've noticed she does second guess herself in a very healthy way, and she isn't afraid to ask for second opinions to make sure her line of thinking is correct. To me, it's a wonderful and admirable trait in a doctor. She hasn't lost her compassion or humanity. She actually cares about her patients and truly wants what is best for them. I consider myself very blessed to have found her and be under her care. I trust her, and her judgement implictly.

Oh we also discussed this nasty fatigue I've battling for almost two years now. She said if was sure I didn't have Lupus, she'd had already put me on something to help that. But, until she knows for sure, she doesn't want to put me on anymore meds than absolutely necessary. Which, I completely understand. She did say if the specialist does rule out Lupus, she'll give a prescription for something to help the fatigue next visit. She also wants to put me on an antidepressant, which I agree is needed. Hopefully, I don't have Lupus so we can focus on the MS and getting the symptoms under even better control my next visit. (which, btw, is March 26th)

*laughs*....though it looks either way, I'm going to be a walking pharamcy. Copaxone, Baclofen, Darvocet, and likely something for fatigue and an antidepressant. Good Lord that's a lot of medications to be on- especially considering they're all very long term. Ohhh, and she wants me to take a B12 and a vitamin D supplement, too. Not a multi-vitamin either- individual suppliments. And, she thinks the Omega 300 fish oil is another very good suppliment to start. So add those to the growing laundry list of stuff I have to take daily. Geez... I'm beginning to feel like my grandma. I'm going to need one of those dorky 'pill a day' containers you see in geriatric units just to make sure I'm not missing anything. I know it doesn't seem like a big deal to most people- but 5 prescription drugs and 3 suppliments every single day is A LOT to me. I'm the type of person that until now, rarely even finished antibiotics. I have always really avoided medications of any kind because I've always felt they're over-used. I don't want them unless they're absolutely necessary. Well, these are all absolutely necassary, and there's so many I find myself having to keep a list to keep them all straight. I know it sounds minor, but it's a pretty big 'mentality adjustment' for me to go from taking literally nothing for years to eight different things a day...and likely even more in the future. Heh... I think I'm going to dub this my "MS Cocktail". hahahaha!

Well, it's very late and 7am comes around way to early, so bed time for me. I'll definitely update again after I see both specialists this month, or sooner if things change before then.

Be well all and may God bless you :)
Mis

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