Doc visit
So I saw my doctor. I found out his concern. MS. He looked in depth at all my charts from previous doc and started to form a theory. The theory is we should be on the look out for MS. Not that I have it, but I have in the past shown evidence to suspect MS.
He read to me what the Neurologist had said - I have *whatever* it is called in your brain that MS people have. It was a long medical word, started with a D. He asked whatever happened with the first time they went hunting in my brain - I told him that I got an MRI - they saw abnormalties in my brain. I then saw another specialist and did some weird tests with black flashing screens and noises with weird things hooked up to my head, feet, and hands. And they poked and prodded me in various places with electricity, to make my hands/feet move without me telling them to. The outcome of that was - silence. I guess I could have been more diligent in following up - because I still don't know FOR SURE but I'm under the assumption if the docs did see further evidence to suggest MS I would have been informed.
I asked him if we should keep investigating MS. He said for now, no. Because at this point even if I did have MS - they wouldn't change my treatment/anything cuz everything is normal basically. He did say, the *second* my cross-eyed "extreme brain farts" show up again (if ever) or if anything changes to go to him - THAT day. I'm supposed on alert for the brain farts, numbness in my hands, extreme physical weakness, anything... different.
So for now, we'll just be on an "orange alert" healthwise (haha i'm so funny, eh? pfft). I'm not sure how I feel about this information. I'm not sure if I should be worried. I just... don't know enough and its not like I will know until it happens. Only time will tell and what symptoms tomorrow brings. I'm not uncomfortable with that particularly cuz that's just kinda how it is now anyway - I don't know when another flare will come. But I'm not exactly comfy with the new info either. *shrug* Dunno!
So there it is. Glad he didn't say his suspicions last week though. Waiting to see him for a week would have killed me.
Edit: Dood I just looked up
MS - I better not have it. It doesn't sound fun AT ALL. And I found the word - the D one that the MRI shows my brain has:
DemyelinationEDIT AGAIN!: It seems I have not educated myself fully on Lupus - it seems Lupus and funny brain things are friends with each other and have fun messing you up. See?
http://www.rheumatology.org/sections/pediatric/sledai.asp?aud=memPHEW. I was freakin' out there.
Sunny.
Sunny today. Sky is blue like only Alberta sky can be. *sigh* So pretty. Not a cloud to be seen. Anyway, no symptoms. All pains, gone. Hm.
How can weather effect so much? Is this normal??
Side: I've been observing this weather thing for about 2 months now. Pain is pretty darn consistent with bad weather. I don't understand this.
Time to do some research I guess.
ECG n' stuff
Saw the doc today. My other docs FINALLY sent him my medical records. He was...different. It was kinda weird. He suddenly... had time for me? I guess that's it. We looked at some of the notes passed between docs about me. I guess I have two kinds of Lupus. Lupus Nephritis and Systemic Lupus Erythematosus. I knew this, I just didn't know the kidney involvement part of it had a name. Interesting.
I mentioned my chest pains to the doc. Everyone in the medical field gets so wirey when you mention chest pain. lol. I knew it was nothing, just a lupus thing that happens to me.
See? But regardless he sent me for an ECG (or whatever it's called where they hook you up to a machine and stick things all over your chest that read how your heart is). It's fine. Go heart! He did prescribe some anti inflammatory/pain killers. So hopefully the chest pain goes away soon. It's annyoing.
The doc ordered more blood/urine. I have to see him next week. Friday. He out of the blue asked, looking thoughful "Do your hands ever go numb?". I kinda stared at him a sec, trying to figure out where this was going... and answered "YES! Why?!" Then I elaborated, see it's only usually my right hand and only when I lean on the elbow. It'll STAY numb for hours after that, but I'm pretty sure that's all that triggers this. So anyway, he then asks if my hands are weak. Well. I'm not sure? Perhaps? I never felt like I had particularly strong hands... anywho, I dunno where all these questions were going. I can wait for answers. I think he has a inkling about something, but wanted the latests test results first. *shrugs* On that thought... he asked if I ever had vision problems. I said no, but perhaps I should re-think that answer. At a time, it could have been yes. Does that count? Remember the extreme brain farts? (Eyes going crossed, extreme confusion, almost felt like the world just shut off for minute -- woo crazyness, the feeling of being stoned/drunk and NOT).
Also had some knee pain today. Not bad. Just sayin'... cuz I said I should on the last entry. Also, weather was rainy. There's a possible link to bad weather. I'm going to start to document it more.
Or not?
Ok, so, the doctor lowered my dose of steriods right? Right. Not sure if what's going on is just some bumps in the road of tapering off these drugs or what. I'm kinda afraid of the what. I've been experiencing random pains, daily. What I've termed "floating pains" because it's like you go to a bed with a pain for example in your wrists next day you wake up with pain in your knees. It floats around your body and can stop anywhere.
One of the first visits to emerg was because of cheat pain. I've been getting that lately - about 4-5 times since lower dose so far. It's really really uncomfy to say the least and disruptive to daily life. It's hard to do anything that requires any sort of chest movement. Even sitting here. So mostly, I lay around on the couch on days w/ the chest pain. It's a drag. TV is boring and I always fall asleep.
I have an appt with my doctor tomorrow. So will discuss the new floating pains with him. I sincerely hope this isn't Lupus going nuts again. Don't wanna do that again so soon.
I was just thinking, the whole point of this blog initially was to record daily happenings healthwise - to tell doctors. I stopped doing that. Maybe I should start again.
