October 1, 2002: Well no MRI today after all. While reading over the new prescription I realized it said brain and not brain stem so I called the MRI place and they said, 'whoops, that'll take more time than we budgeted' so I had to move the MRI to the 8th. I'll hand carry it over to Doc Greene sometime after I get it. Want Rick to look at it too if possible.
Dr. Kelman was having a very bad day. My noon appointment ran so late that Marsha (my ride) had to leave and I ended up calling Gale after it was all over. She picked me up at 3:15 and I was home by 4 (that's a long time for a noon appointment!!) Doc Kelman looked over the MRI and saw maybe a couple more lesions than Doc Greene, but it didn't seem to be terribly significant. He said IF I've got MS, it's mild. He asked me about my Lyme tests, I'm wondering if I need to get one more of those just to completely stop me from worrying. Might call Dr Stearns and ask her about the percentages of false negatives after the two tests and make my decision from there. Doc Kelman agreed with Doc Greene, he's interested in the results of a lumbar puncture (sounds a lot better than spinal tap, doesn't it!!) Every doctor I talk to says a spinal tap is no big deal. Every human being who's had one that I talk to says 'Yowsers, big pain here!!' *sigh* Guess I'll find out and have my own opinions.
Gave copy of document thus far to Dr. Kellman on 01 October 02
October 3, 2002: Yesterday my eye was really really bad, had trouble seeing the lines on the floor at bowling, but today has been great so far. I didn't have any problem seeing at all until about 9:00 AM, so there's definitely signs of improvement!! Can I say right now how much I'm glad I'm not on the steroids anymore? The clarity thing is absolutely AMAZING!! I can't imagine why people take drugs for fun.
October 4, 2002: Let's do a symptom run down shall we?
October 10, 2002: Well not much to say for this week. I had the MRI, but Dr. Greene has been out of the office so I haven't been able to drop it off. Nothing new symptom wise, although everything is the same old same old. We leave for Disneyworld tomorrow, so I guess I won't know until after that what's going on.
October 11 - 16, 2002: Off to Disneyworld. A good trip all around. Even though it was really warm in Orlando, I did okay. Quite often my eye would go dark and blurry, but it switched back to normality really quickly. I'm feeling pretty hopeful about all this. Normality by the way is defined as 'blurry enough that I'd like to get new glasses, but not so blurry that I can't read 12 point type on my computer again.'
October 17, 2002: Well home from Disney to find that there are 2 messages on my answering machine. One from Dr. Kelman, one from Dr. Greene, both asking me to call their offices ASAP. Checked my cell phone and there's another one from Dr. Kelman, again asking me to check in. I figured that probably wasn't good and well....
Sigh. So I'm scheduled to have a 'lumbar puncture' done on October 28th in Dr. Greene's office to confirm the diagnosis, but apparently the lesions on my spine and brain stem are a complete giveaway. On the 28th, I'll also be given a whole heaping pile of info about treatments and we'll be able to make intelligent decisions about medication and the like. More info on all that as I get it.
October 18, 2002: Having had a day to get used to the idea, I've decided I can live with it. Good thing too, since I have little choice. I'm gonna code up all this info and put it up on my website and send it off to the F.O.G. (Friends of Greykell) list so that folks know what's been going on with me. The web page address will be: http://mywebpages.comcast.net/greykell/mssymptoms/symptoms.html
October 21, 2002: Well some good news is at hand. First of all, I've gotten about a million emails and phone calls from friends who I havent talked to in a long time and that's all to the good. It's great to be catching up with folks. More importantly though is that for the last three days my face has not been even the slightest bit numb. I was afraid to write it down before because I didnt want to jinx it, but I think after three days I can say that maybe weve beat this part of it. (Well at least for now, but well cross that bridge when we come to it.)
On the vision front, I'm bouncing back from each blurry bout faster and faster. Yesterday I went and threw boxes of cookies around for 6 hours as we were unloading the Girl Scout cookie trucks. At any given time, my vision was blurry, but never as bad as its been in the past. AND I was back and having nearly perfect vision after only sitting around resting for about half an hour. That's great news, it means that maybe were working our way through the end of this outbreak. I suspect that when its all over, I'll need a new prescription. At its best, my vision has yet to come back to perfect, and also, I think I'll be dumping the bifocals. It's too danged hard to use them when the optic neuritis is going strong, so I'll be looking forward to new glasses sometime in the future. (Bummer on the laser eye surgery though. I'm pretty sure that my having MS suddenly puts me on the list of never being allowed to have it, although you can bet I'm gonna ask once my eyes have been stabilized for a year or so!)
October 22, 2002: My feet itch. My hands itch. When I say itch I mean a maddening, drive you crazy, scratch and scratch and scratch and keep going, totally willing to draw blood if the feeling would just go away. Is this a symptom or do I just have painful athlete's foot? AIEEEEEEE. This is just an incredible hassle. Can't find itching on any of the neuro sites I've looked at. Maybe it's all in my mind.
Visionwise, life is VERY good. Probably spent less than an hour with dim blurry vision today. The rest of the time I could see just fine. (That means that I'm definitely coming out the end of this outbreak, or so I hope!)
October 28, 2002: Well today's the day for the spinal tap. I'm unbelievably nervous about it. I don't LIKE headaches and I'm desperately afraid I'm gonna get one. Rick's driving me in for it and then he'll drop me off at home. My plan is to curl up in bed and watch last season's 24 eps that Kurt and Ellen gave me!
Symptom report: for the last 5 or 6 days, I've probably had some sort of bad vision maybe 6 hours total. And that bad vision is nowhere near as bad as it was during the summer. It really looks like I'm coming to the end of this outbreak (or so I hope). I'm sure the cool weather is helping me out!
Gave copy of document thus far to Dr. Greene on 28 October 02
October 29, 2002: Well the spinal tap wasn't as bad as many folks told me but not as good as the docs implied either. The anesthetic designed to make the spinal tap not hurt was a BIG burning pain, but Rick says I only called the doctor bad names once, so I guess all around it wasn't that bad. Came home and laid down and (probably due to the Tylenol 3 I'd taken before the tap) fell immediately asleep. Slept til the phone rang at around 1:30 and went downstairs to get some lunch. I was on my feet for around 15 minutes.
While I was up, the doorbell rang with a package. The ever so adorable Craig Taubman sent me a package of his latest 4 CD's (now do you all see why I'm a fan?) Between Craig and my friend, Joan Wendland (who sent the coolest gift basket of all time - chocolate bandaids and lemon drop pills!) I'm undone. Not like I'm asking you all to give me gifts you understand, but it sure does brighten the mood. Makes me think that I need to send more flowers to friends who might need them.
Anyway, enough digression. Ate lunch upstairs and continued to lounge around on my back until about 5:30 PM. Absolutely couldn't stand it anymore and had to get up after that. I know Doc Greene said 12 hours, but there's just no way one can lie on their back for 12 hours. Especially with the kids needing my help for assorted stuff. I was only up for a couple of hours (most of that spent sitting) before I decided to head back up to bed again.
Got up this morning after a good 8 hours of sleep and after walking around for about half an hour ended up with a niggling little headache.... That headache turned into less of a niggle and at the moment is less than fun. I'm curled up on the couch with a big glass of water, a can of coke, and a couple of Tylenol. Hope this is just a coincidence headache and not the big nasty spinal headache I've read about.
On to details about MS drugs. Yesterday, Dr. Greene gave me a heaping helping of info about three different drugs. My choices seem to be: Avonex (more side effects, but more widely studied, one injection per week intramuscularly), Betaseron (similar side effects, injection every other day, but only subcutaneously) or Copaxone (few or no side effects, injections every day, may take longer to take effect, least studied drug of the three). I had a long talk with Joan Wendland's cousin who's been living with MS for about 12 years. He's a big fan of the Copaxone and makes a good case for using it. I need to make a decision and soon. I've put out a query on one of the MS forums that I've been lurking in for a while and will see what other users have to say about the three possibilities. It's scary and daunting to think about having to give myself a shot every day, but I know I can learn to do anything. My friend Erika has diabetes and she and I had a long talk about the needles. It was a help.
October 30, 2002: HEADACHE HEADACHE HEADACHE!!! Take it from me, if your doctor says to stay on your back for 12 whole hours after your spinal tap, DO IT!!! I've spent the day lying down and feel a lot better, but boy does my head hurt!
Feel free to follow my story on to November in which I choose an MS therapy and get the results of my spinal tap
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