I'm still having a hard time figuring out what "significant new symptoms" means. Something weird happens to my body at least once a week even when I'm not relapsing and it's just not my style to be running to the doctor all the damn time. Apparently, I am officially mid-flare right now.
Thursday I finally caved and went to see the neuro after 3 straight days of my left arm failing it's duties. I've been having this problem with my left side for about a month, but it's been off and on. So I went to see dude, and he chastises me for not coming sooner after hearing my list of recent symptoms. And I had forgotten a couple because one is that I can't remember shit right now. I've been word fishing a lot lately which makes writing, blogging, and explaining the magic of radiology to my patients very frustrating. My legs have gone all wonky as well so I limped around the hospital all weekend, and no one had the balls to ask me why. My head hurts. A lot. But the doc says headaches are not correlated to MS. Huh?
So WE decided to forgo the IV solumedrol since I've probably already been relapsing for several weeks and I can't afford to take the time off for the infusions. I'm actually starting to feel a bit better but that's likely due to the fact that I have been off work a couple days. My next stretch is 55 hrs in 5 days, so we'll see how it goes in the middle of that. And while I've woken up feeling pretty good the last couple of days, by noon my heads athumpin, my left arm is stupid, I get all shuffle-footed, my neck aches, and it feels like nap-time straight through to bed-time. When it finally is bed-time, I'm suddenly wide-the-fuck-awake, and my legs start to jerk.
All this is causing me to have an attitude that's not super-conducive to doing Halloween projects with my short people, or getting stuff done around my house which is filthy. I've got an hour long joyride in the knockknockbangbang magnetic fun house to look forward to in two days as well. And for the first time, the script for the MRI simply states "MS" as the ordering diagnosis, so I'm guaranteed to get at least one, "But you look so gooooood!," from one of my colleagues in the MRI department at work. If the results are anything like I expect, I will have to start thinking about which meds to try next since the Avonex is obviously not working.
I'm grumpy and lonely coz my husband's working out of town this week and he's the only person in my life that can be nice to me without making me feel patronized or placated. My cop brother will be coming around in his squaddie though to "make sure everything's ok" and not at all because he wants to mooch off my wi-fi and freak out my neighbors.
Jeez, I'm just whining now. Think I'll call it quits.
5 comments:
Don't fret too much about the "is it a relapse or am I just a wimp?" conundrum. I've had tiny 'events' which didn't warrant a trip to the doctor and just waited it out. The steroids only shorten an ongoing relapse, don't change the disease itself.
I forgot when you were diagnosed and when you started Avonex. If it hasn't been that long ago, you might not need to switch. But I guess if your brain lights up like a Christmas tree, then it might be something to consider.
Hope you begin to feel much better very soon. And you know, MSers are some of the most attractive folks. We always "look so gooood!"
You know you are a MS veteran when you soldier through a relapse and finally give in to seeing the doc when it's damned near over. New symptoms, old symptoms..it's always something.
Your work schedule would be hell for anyone..how do you do that, and manage the "short people"? I give you credit..it can't be easy.
Ditto on the All Mighty Bubbie comment...because, unlike me, she actually speaks truth! LOL
Yeah...I've got your "syndrome". And I can never figure out (still after 5 years) when/if ANY of it matters and/or what to do about it.
Basically, I've got nothing worth wisdom to add here, except to say, "Whine away...I"m told small doses of it extend our longevity". (or maybe that is "wine"?...aye, who cares!)
Linda D. in Seattle
I always wonder the same thing: what is worth getting my doctor involved? I am a bit fortunate in having two Neuros. I see one every six months or so. Although, I don't know how much longer the insurance is going to stand for that.
How do we know what is just general illness i.e. cold, flu etc vs MS flare up? Case in point, today I found out that there is fluid behind my ears, and I need to take some stuff in order to work that out. It will probably help with my balance issues, and is not MS related. Hmm, who knew?
Whatever the case, it seems that your strength is from within, rely upon it, but know when you have to slide out for a bit. MS has taught me that no matter how hard I want to be able to do everything, I can't.
Furthermore, as a guy who just came through a flare up, I also wonder when is the appropriate time to change meds? It seems so arbitrary. It's why I don't trust Doctors or the power structure in general. We should start a riot of some sort, let “them” know of our dissatisfaction, but what kind of army would we have with just a bunch of MS laden soldiers?
P.S.
Just keep listening to The Sundays. Reading, Writing and Arithmetic maybe one of the most perfect records ever made. Although, as my wife will point out, I say that about anything that lives on my Ipod, seriously, though, The Sundays, it’s a fine choice. The Sundays may just be the cure. I’m gonna have to listen to it now….
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