September 5, 2002: Well it's been a tiring week. A couple of new things have been happening. On Monday I decided it was time to start exercising again. Usually when I ride my exercise bike, I throw in a movie and put the closed caption subtitles on because the bike is very loud. Well I can't read the subtitles anymore. It's a 27 inch TV only about 12-15 feet from the bike, but it's so blurry I can't even see any letters. Also, as I exercised, my vision became dimmer and dimmer. The TV looked like when you see someone completely backlit, so you can only see their shape. Over the last 4 days, this has happened repeatedly. Vision dims down severely when my heart rate goes up. Also, my feet have start tingling (both of them) and when I finish exercising the tingling sensation moves all the way up to my midthighs. Several of my friends say don't worry because this is normal for them, but it is NOT normal for ME. Both the vision and the tingling things have been happening a lot more, even when I exercise lightly like when I walk down to my neighbor's house.
Yesterday was the worst day ever for the face jolts. It happened 4 times in the day and one very slight one was triggered by wind in my face. This is the first time that I've been jolted by something that might cause a problem for my driving. I'm not positive I should be driving NOW, but I'm certain that if I get jolted while I'm driving I will be a menace!
On Septembers 4th and 5th I've also been a little bit 'out of it'. Not disoriented, but just 'off'. I feel like I'm coming down with something. Occasionally feeling a bit weak and I've been falling asleep in the afternoon. (HOWEVER: I must note, that I've been staying up later and later because I jitter so much when I try to sleep these days, thinking of horrible possibilities, that I have to exhaust myself before I bother trying. If I get a decent night's sleep for a couple of nights, this problem may solve itself.)
The numbness is getting stronger. Definitely painful when it hits and it makes my left ear ITCH like mad. I've been having more and more frequent headaches that radiate out from behind and to the left of my left eye. It also hurts at the point where my jaws connect. I've been grinding my teeth a lot while I sleep, stress again I assume, so that's possibility the cause of that one.
Monday I get my MRI and Friday I see Dr. Getzoff, the general neurologist for the first time. Here's hoping that we figure this all out. Oh yes, Dr. Stearns ran a Western Blot test on me to check for Lyme and this test also came back negative. Two negative Lyme tests make that one a much less likely possibility.
September 10, 2002: Pretty annoyed about the MRI yesterday. I showed up to have it and they said 'nope you scheduled it for Wednesday.' I'm damned positive I didn't since I'm going to have to skip out of bowling early to get to it. GRRRRRRR. Anyway, I'll get it done tomorrow and Rick is driving me to both the MRI and to the Neurologist on Friday. I'm less worried about the blood pressure thing as of today since I had a perfectly normal reading at the safeway today. I 123/76 with a pulse of 73. Found a couple more ways to set my face off this week. Now I can't even rub a washcloth or anything on my face in the shower 'cause I get the jolt. I guess I'm left with either not washing my face or being very very careful in the future. Also, Aly got her trombone today, and I showed her how to blow on the mouthpiece. INSTANT JOLT!! I won't be doing that again anytime soon. Of course I had to experiment enough to find that I can set off the jolt by blowing razzberries against something (like my fist or a trombone mouthpiece) but not if I just stick out my tongue and blow. (Important detail if I need to make some editorial comment!!)
September 11, 2002: Had my MRI today. Good news, I have a brain. I'm carrying around photographic evidence. It wasn't as all around annoying as I was given to believe an MRI would be. Rick looked at it and said, "Well no sign of trauma." He doesn't immediately see anything else, which I consider a plus. On Friday, I'll see Dr. Getzoff and hopefully we'll know more.
September 13, 2002: Well Rick went with me to the neurologist today. Didn't get to see Dr. Getzoff because she had a medical emergency and had to leave. My new neurologist is Dr. Greene. I liked her a lot, she answers questions and seems to have ideas but be willing to listen to suggestions as well. She sees no signs of MS or a tumor and did a bunch of goofy tests on me. (Walk a line heel to toe, try and push against her with different muscles, checked all my reflexes, etc.) She decided it's time to treat my symptoms at last. I'm going on a 3 day dose of IV steroids which should make a difference in my eye. I've also been given a drug called neurontin to take for my face, but I'm not to start that until after the steroids. No caffeine (woe is me) while I'm on the steroids since I'm gonna be wired.
September 14, 2002: The nurse came out today and hooked me up to the IV. She put a hep lock in my hand so that I can give myself the next two doses on my own. It took about an hour to shove the drugs through. I was wired all day and about 4:00 AM I noticed that my face was suddenly not numb! The eye hasn't changed, but at least something is happening.
September 16, 2002: Yesterday was more of the same. I gave myself my steroids and took my Pepcid and then fell asleep for about 5 hours. The numbness is still gone and I haven't had a single jolt since noon yesterday. This is a big improvement. I even tried several of the things that have been setting off jolts and none of them did, so I feel pretty good about it. Today I took my last dose of steroids and got a call from Dr. Greene. She says that she's done some more research and wants to put me on a come down dose of prednisone to finish it all off. She's called the order into my local CVS and I picked it up this afternoon. I have to take six 10mg pills for the first two days, five pills the next two days, etc. All the way down to a half pill for the last two days. Should be a couple of weeks til I'm down. A little disturbing thing is going on today. As of about 3 PM, I've become REALLY dizzy and disoriented. I'm having trouble coping. Hope that this'll get better as the steroids go away.
September 17, 2002: SING IT WITH ME!! 'I'm so DIZZY, my head is spinning...' Very dizzy and disoriented today. What happened to my wonderful hyper self, these steroids are driving me crazy. I'm exhausted but I can't sleep. Face is still not numb and no jolts, so life is good on that front, can't tell if anything is going on with the vision. Got my blood drawn for the labs, so I'm just waiting for the results.
September 18, 2002: Sad news. My face jolt went off this morning before I had all my pills. BIG TIME. More painful than I've had it yet and then of course the left side of my face went numb again and has stayed that way all day. After I took the Prednisone, I got all wonky and disoriented again, but I managed to go out and bowl (not too too badly) and shop at BJ's. I'm STARVING to death, a side effect I was warned about and I'm putting on weight. Very tired and out of it today. Wow, and incredibly weepy. Maybe because my period is here as well, but I was unbelievably depressed and bursting into tears for no reason all evening!
September 19, 2002: Tried to walk 7 houses over to Marsha's and completely wiped myself out. So dizzy. Slept half the day and even more disoriented and out of it. I'm arranging rides all over the place and trying to cope with life. I've cried for hours today over absolutely everything and nothing. I'm told by my friends on the phone that I sound drunk. It really doesn't help to know that this is the steroids talking because I'm so out of it I just cry about it. Face is very lightly numb, but no jolts since the big one yesterday. I've got a headachy pain in the back of my left eye (not while I move it around, but while I just try and see while watching tv or using the computer or whatever...) Stayed up way too late tonight simply because I was gaining a little clarity as time went on and I hated to waste it on sleep.
September 20, 2002: Might be getting used to these darned steroids. I took them about 8:30 this morning and of course got all dizzy like I've been, but I felt better in the afternoon. My vision today has been TERRIBLE, I can hardly see through the big fog in front of my face, but the sun came out around 4:30 and that helped a LOT. Other random stuff going on... I have a headachy pain behind my left eyebrow that just won't quit, also my jaw is really tender on the left side today, but I may have been doing some serious clenching again. Last night I couldn't hear well and pulled a LOT (like a ball the size of a qtip end) of black bloody ear wax out of my left ear. My ear doesn't seem to be hurting in any meaningful way although I've had a lot of off and on crackling noises. I think I have to simply accept the fact that I can't/shouldn't drive when I've taken these steroids. They make me so loopy that I'm walking into walls and falling over when I'm just standing still. Even when I felt better this afternoon, I got up to answer the door and just about collapsed from the dizziness.
September 21, 2002: Later last night if felt as though my vision was a LOT better. It comes and goes like a sine wave, almost normal and then TERRIBLY bad. The thing that's getting me now is that my ankles are swelling and I'm sweating like mad! I'm absolutely dripping with sweat, even when I'm just sleeping or sitting in a chair or something. Still really dizzy and my friends say I sound drunk after I've taken the steroids in the morning. I feel totally disoriented for at least 6 or 7 hours before I start to feel a little more normal each day. Let's hope as the dose comes down that I start to get more back to being ME again.
September 22, 2002: Okay, I've noticed that my vision seems to be getting better each evening around 11 PM. Maybe it's getting better but the steroids are masking it? Hard to tell. I got up this morning and came downstairs and felt okay and could definitely see clearer (the left eye was dimmer, but not as blurry as it had been compared to the right eye). Took the steroids of the day (40 mgs) and then about 15 minutes later everything went wonky again. Half stumbled upstairs and fell asleep until noon. Woke up sweating and deliriously thirsty. Got up and felt somewhat okay until taking my shower which was NOT a hot one. Just the effort of standing up and then walking downstairs has COMPLETELY exhausted me again. Eye went sharply blurry and I have to sit down and shake. I HATE these steroids!!!
September 23, 2002: I'm back to followup with Dr. Greene today. Got up this morning and took a shower and thought 'as long as I'm gonna see the doc let's see if I can set off the face jolt.' Sure enough, jolt went off when I let the water run on my cheeks. I'll just keep being careful, at least I haven't had a jolt from eating or wind or anything in a while.
'MRI of C-spine and brainstem with fine cuts through pons with and without gad.
Please give patient a copy to bring to me. (Signed Diana Greene-Chandos)'
Oh and wait, Dr. Greene gave me a call and wants to add a bit more to the MRI just in case, so I'll just type in the whole scrip when it arrives by mail. Around 9:00 PM life became very good. My eye was suddenly as clear as can be (maybe not quite perfect, but the BEST it's been since this all began!!) This lasted for about 2 hours before I began to get a little blurry again.
'MRI of C-spine, brain (only need fine cuts through pons & Cavernous sinus) with and without gad. DX: Left cranial nerve II, V, and VI neuropathies.
Please give films to the patient! (Signed Doctor Greene-Chandos)'
September 24, 2002: Woke up this morning with the same old same old symptoms. Blurs, dimness, took steroids, became wacky and weird, tired too more than I have been lately, but I DID get to bed late. Around noon, my left foot started burning (like I was standing barefoot on hot asphalt.) For about 4 hours following that, my left side all the way up to my shoulder FELT weaker. I'm not sure that it actually WAS weaker, but I felt completely wrong. I was VERY fatigued and had trouble standing up because of dizziness and general tiredness. Round about 6:30 or so I felt substantially better, still blurry vision, but at least the weird weakness had gone away. If it's still there tomorrow, I'll give Dr. G a call.
September 29, 2002: It's been a weird week. I've continued to do the hot and cold nerve jolts in my feet. It's hard to stay standing. I've walked Marsha's dog a couple of times in the last two days and I can go out and walk for an hour and I don't fall over or anything. But.. It does completely wipe me out and the vision gets so bad that I can't see Rex (a golden retriever) against the white sidewalk at the end of the 12 foot leash. (Well at least not with just my left eye, with both eyes, he's sort of a fuzzy blob.) I shake a lot, especially when I do something incredibly strenuous like walk across the room (hey everyone that's sarcasm in case you didn't guess.) I've noticed that I have to HANG ON to something quite tightly if I stand up for awhile, otherwise I will fall over. Not might fall over, will fall over. Couple of days til next MRI and followup with Dr. Kellman. Whatever he decides, I'll probably go back to Dr. Greene for confirmation so that I don' t have two different docs giving me dueling prescriptions!
And so it continues on to October if you'd like to follow along as I finally get diagnosed!
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