November 7, 2002: Well Dr. Greene is finally back from her medical boards and I gave her a call today to see what's up. My spinal results are back. She didn't sound as positive as I wanted her to, but the results are "consistent with Multiple Sclerosis" so I guess there's no last minute reprieve. Here's what she said (I can't begin to understand what this meant, I'll have to do more research!) My white count was 8, red was 2, with 96% lymphocytes. My myelin basic was negative, IGG a little bit high and showing a pattern consistent with MS as noted above. She also had them do one more Lyme test on the fluid and that came back negative, so there's absolutely no reason to suspect Lyme anymore.
There's been some question about what kind of MS I have since you technically have to have at least two exacerbations before you can figure it out. Doc Greene talked with a couple of colleagues, and has decided that since the 6th nerve palsy (the double vision peripherally) showed up an entire month after the other symptoms (and come to think of it, the L'Hermittes showed up a few days after THAT) then we're going to go with a diagnosis of relapsing remitting MS. Hopefully after I start the drugs, I'll hold off on the remitting part of that for a while!
I'm positive I'm choosing copaxone as my drug of choice, at least to start out. All the people I've talked to are using either Avonex or Copaxone and everything I hear makes me figure that Copaxone is the better choice of the two for me at this time. Besides, I think I'll learn to give myself shots a lot faster doing it every day rather than once a week. That's just too long to be thinking about having to do it again. Making it a daily shot will make this a routine much quicker. I was supposed to receive a call from Molly, the nurse who's going to teach me to shoot myself, but she never called today. I'll have to give another call tomorrow, since I want that appointment as soon as possible.
I next see both of my docs, Greene and Kelman on November 19th, so there probably won't be any updates until then unless something of note happens.
Symptom report: I've been able to see well for weeks now!! I only notice a very slight blurring and dimness when I work up a good solid sweat. The trigeminal neuralgia is completely gone, it's been almost a month since my face stopped being numb! I still have the L'Hermittes sign, but it seems to be mostly a quick jolt down my right arm and doesn't always happen. My feet tingle occasionally with no warning, but it's not really all that bothersome. Still have double vision when I look at things out of the corner of my eyes, but that's an easy thing to ignore. Only thing that's really annoying at the moment is that I have a miserable cold!
November 11, 2002: I have an amazingly horrible new neurological symptom. My head itches constantly. I keep feeling like there are little bugs crawling around in my hair. Could this be a weird new symptom of MS??? NO!! The girls have LICE! EWWWWWWWWW. We've been lucky so far, this is the first time lice has hit this branch of the Dutton family. I've treated the girls, vacuumed the house, bagged everything that can't be washed, washed everything that can't be bagged.... I'll be combing MY hair with the nit comb as much as possible. (Bet YOUR head itches just reading this!!)
November 16, 2002: We seem to be defeating the horrible lice monster. My head still itches, but I comb out my hair 2 or 3 times a day, so I'm quite certain that it's "all in my head".
November 19, 2002: Today I saw both Dr. Greene and Dr. Kelman. Pretty much what I expected. Doc Greene gave me my spinal results. I have three very clear oligoclonal bands on my spinal fluid report. So very clear that the head of the laboratory that did my tests wants to use my results as a control to show new techs what classic MS results look like. My fifteen minutes of fame will have to go by without any of them knowing who I am darn it, but it's still kind of cool (in a "oh darn, I really do have MS, there's no doubt about it, kind of a way.")
I did all the assorted goofy tests with Doc Greene. I seem to be the same or better on all of them. My reflexes are still super fast (I still think that's odd.... Shouldn't they be slowed down?) and my eye still has pupil reaction that's different than the right one, but overall everything seems to be finishing up for now. I'm to check back in at 6 months unless I have extra symptoms that are "quality of life" affecting. Doc Greene says that there are ways to treat most every symptom, so I shouldn't have to live with anything that shows up out of the blue on my own. As for the Copaxone that I start tomorrow, we'll be hoping it works well. If after about 6 months we don't see some sort of benefit from it, we'll reexamine and possibly move to one of the other drugs. Hope not, since I'm still voting for the low side effects from the Copaxone.
Doc Kelman pretty much reiterated everything that Doc Greene said, I'm to see him in 6 months as well, but theoretically for a final visit. I went ahead and got copies of my records from his office to put with my own collection. He also gave me the fateful MRI report that says that I am "consistent with MS" for my collection. I can go back to my ophthalmalogist any old time and have a regular exam and get new glasses (mostly to dump the bifocals that I am no longer to use, since they will be a problem every time I get the optic neuritis again.)
Around 2:30 PM today I started thinking about the fact that the travel kit never showed up and wondered when I should call the Copaxone people and say "where are my drugs????" when the doorbell rang. There was Mr. FedEx with a GREAT big box. It contained a welcome folder, a thing to sign and send back so that the drug company can start billing my insurance, a big red plastic bin to put used needles in, the auto injection device, and a month's supply of prefilled syringes. I smiled ecstatically about the way that things were moving forward and then burst into tears. Cried for about half an hour and feel a lot better now.
November 20, 2002: Well today's the day. I learn to shoot myself with Molly the nurse at 7:00 PM tonight. Hopefully I'll manage it without too much hilarity. My fingers are crossed. My missing travel kit for the copaxone came today, just in time to load the syringes in to take to my shot lessons!
November 21, 2002: So let's picture our entertaining little Greykell last night. I showed up at the office at 7 PM on the dot and the door was locked. "Phew, I don't have to have shot lessons after all," was my first thought. Then I foolishly knocked at the door. Molly let me in and we talked a little bit and she gave me ANOTHER travel kit. Feast or famine with those things, but I'm just as glad. The travel kit only holds 5 syringes and I've been known to travel for more than 5 days, so having two makes me feel a little bit more confident.
Molly spent some time showing me how to load up the autoject device and showed me how it worked with her "fake skin". The fake skin looks more like a bizarre paperclip holder, you cram the needle through the soft stuff at the top and inject the fluid down into the reservoir below. We tried it a couple of times. Then we practiced again using just the syringe because if stuff goes wrong with the autoject I'm gonna need to know how to use the regular syringe on myself as well. I made sure to practice absolutely every part of the experience including the cussing about how much it hurt and I kept panicking and changing the subject, but eventually didn't have any choice and it was time to inject myself. We chose the left thigh to start out because it's the absolute easiest place for a right handed person to shoot themselves. Cleaned the area with an alcohol wipe (in a circular motion moving outwards to make the circle larger and larger), waited for it to air dry, took out my syringe, removed BOTH caps from the needle, eyed the needle distrustfully, pinched a bit of my thigh, held the syringe at a 90 degree angle above the pinched area, and..... FREAKED OUT! I hid it masterfully of course and eventually JAMMED the needle into my skin.
Unbelievable as it seems it didn't hurt at all. Not a speck. I sat there looking at my leg with a syringe sticking out of it and thought "wow, that just doesn't hurt, this is amazing." Then I pushed down the plunger and got all the medicine in and pulled out the needle. Ooops... Instant blood. I'd gotten a little enthusiastic sticking the sucker in. Molly gave me a bandage and I held it on for a few seconds until the bleeding stopped and then asked me if I felt the burning sensation that is a common feeling from when the drug first goes in. "Nope I'm just fine, why this is totally easy... I'm amazed at how simple this... OH MY GOD!!! *&%$####$%^$%^^&**((^$##@$#@$ "
From the above you can guess that yes indeed the drug does burn. But it only burns for a few LOOOOONNNNGGG seconds and then it settles down to feeling like you bashed the area into the sharp corner of a table or something. All around still not all that bad an experience. Molly watched me for a few minutes to make sure I was okay and not having any bad reactions to the medicine and then I headed for home. Had to sit in the parking lot and freak out big time (tears and hyperventilation were involved) but I drove on home when I was calm.
It's a very strange feeling. I am now officially EMPOWERED MS WOMAN! I can always get Rick to give me my shot if I feel like I can't handle it, but I'm completely capable of taking care of myself. I'll be taking the copaxone daily for the rest of my life or until someone cooperative cures the darned disease (or creates a pill, an MS pill would be nice!)
The Shared Solutions people (Copaxone's helpful phone folks) had asked me to call after I had my first shot. I chatted with a nurse for about 10 minutes about the experience. She'd like me to call tonight after I give my first autoject injections as well. I've demanded a pen and anything else they have lying around with the Copaxone label on it. It seems to me that if I'm using this drug I should be allowed to have free stuff. (Mercenary of me I know, but there are so many anesthesia drug freebies lying around our house from Rick's work that I just want something of MINE.)
November 24, 2002: No real site reactions until today. My hip site is ITCHING!! It's not constant or I'd have to scratch my skin off, but it's still driving me crazy. Hope it stops soon.
November 26, 2002: Well I've given myself several shots now and it's getting a bit easier. It still burns like the dickens a few seconds after I give myself the shot, but then it settles down. I find I like to sit down and just cuss a bit to myself after I get the shot, but now I only have to cuss for a minute or two instead of fifteen or more. I've got a question for Molly the nurse. I thought I had 8 sites on the body to inject (right and left thighs, arms, hips and belly.) I got a book (along with my pen *grin*) from the Shared Solutions folks yesterday that says I'm to treat the belly area as ONE site. That's a bummer if true, 'cause the least painful shot so far has been in the belly. No more itching problems since Sunday, so I'm feeling pretty side effect free.
Molly says that I can shoot myself in the belly twice not once, so that's okay. She says that most people like it the once way so that they can use the "if it's Tuesday it must be the right thigh" system, but I work better on the "yesterday I shot my left arm, so today I'm shooting my left belly" system anyway!
November 27, 2002:
Listen my children
to what I say
'bout the misadventures
of our hero, Grey.
Twas Turkey Day eve
and she needed copax
but they were driving to grandma's
with nowhere to relax
At the rest stop in Jersey
she took her supplies
grabbed a handicapped stall
and glanced round with surprise.
"There's no counter in here
and a lot in my paws
a syringe, autoject,
and a bandaid and gauze"
Balancing the gauze,
with the tp underneath
autoject in right hand
syringe in the teeth
She loaded the device
and dropped her pants
reached round for her hip
and did an awkward dance
She gave the injection
(no trip to the beach)
then said "oh no,
that bandaid's out of reach"
Success at last
and all without dropping
this empowered woman
show's no sign of stopping
One thing she learned
as she traveled afar
Next time her husband,
shoots her in the car!
November 28, 2002: Happy Thanksgiving! Today was my first repeat shot, back in the left thigh where I started with Molly last week. I did a good job, although the needle hurt more than last time. I was a little nervous because it seemed that there was some liquid in the package before I took the syringe out of it, but Rick and I think that was probably condensation from the wacky experiences with the ice chest.
What? I forgot to recount the wacky experience with the ice chest? Well we found out on the way up that the perfect place to put the little ice chest of medication (right between the two seats in the front). This was all well and good until we'd driven about 4 hours and discovered that the heater was concentrated RIGHT THERE and that it was doing it's best to warm up the ice chest for all it was worth. We moved it to underfoot where it had a much better chance of keeping my shots cool. I count on the fact that the darn things are supposed to be able to take 7 days of room temperature to say that the fact that it got a bit warm in there didn't ruin the meds.
November 29, 2002: The day after Thanksgiving. Clearly I needed to shop. A little worried about the fact that after a couple of hours wandering around the stores I would find myself standing still in line or something and would suddenly trip. I didn't hit the ground or anything, but I would definitely just suddenly lose my balance. It's weird and annoying and I hope it doesn't happen to much more.
Back to the left arm with my shot today, important shot because that was the one that hurt so darned much that I had to call Shared Solutions last time. I did a lot better this time. It's not precisely easy to clutch the autoject with one hand and hold it closed so that I don't have to press it against my arm so tightly. I think I'm starting to maybe sort of get the hang of it. Figure that sometime in early January I'll be doing an entry talking about how darned easy it all is and wondering why I made such a fuss about it back at the beginning.
The burning still seems to hurt for about 10 or 15 minutes after I give myself the shot. After that I'm totally fine and probably could just take my bandaid off, but I still need it for now. There's a certain placebo effect in having a cool glow in the dark bandaid stuck on my arm.
November 30, 2002: Got a package from the Shared Solutions folks containing an odd gel package I was supposed to freeze and then use to ice my shot site to minimize the burning sensation. Tried it out today. Not sure I like it, I felt almost as if it burned more. Guess I'll try it again next time the arm site rolls around as those are generally the most painful.
Don't know exactly why you're still reading, but I'm still writing, so head on to December where so far there's just not any new news!
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