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Flare One |
3 January 1997
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Part IV: Current Condition updated 22Nov96
Right now I am enjoying a condition known as L'Hermitte's Syndrome. It is hard
to explain, but suffice to say that it is an odd sensation which is neither
annoying nor debilitating nor painful. I have a tingle spot on my left shoulder
blade, too. And getting over the side affects of my latest Solumedrol infusion.
(which are actually mostly positive!) I think I may have found a culprit for my
disease as well: bologna. I ate a bologna sandwich every day all through high
school. Now that I am away at college I down hamburgers daily. So I am trying
to change my diet right now.
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updated again: 3Jan97
I just started on Avonex (see link to Biogen;
they create it) yesterday. I experienced just about none of the advertised
side-effects, although I only recieved a half-dose since it was my first one. I
hope this turns out for the better. well I haven't had any problems since
yesterday, anyway! :)
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updated again: 6Jan97
For those that are curious, I am currently feeling no neurological
disorders at all. zero. zippo. my l'hermitte thingee went away, all my numbness
and random tingles are gone (they have been for a while) and both my eyes work.
Actually, my right eye (that is the one that fogged originally) does get a
little splotchy when I am outside playing hoops, but it always gets
better, and the docs say it always will. And I understand why. So don't
feel bad for me. You can pray for me if you believe in its effectiveness,
you can donate money to one of the organizations listed below, or you can
simply think well of everyone you know (that would include me) since I
think that is really the only cure for anything. Good
vibes.
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Update
update: 7Feb97
Got my sixth Avonex shot yesterday, and managed to fall asleep before my headache
got too bad (I react to this stuff in about 4 hours, I've found, which gives me
time, in this case, to go to Volleyball Practice
between the times when I get the shot and the side effects set in.) And as long
as I get the shot late in the day, I can go to sleep before anything bad happens.
update: 19Feb97
Relapse city! My legs have gone AWOL again. I feel like they are operating at
about 80-90% right now. I can still play volleyball, but with limited motion and
dexterity. So much for the Avonex...I am seriously considering going through with
something a Witch Doctor prescribed for me: some sort of pills. She was very
sincere about this...oh shit, this disease is starting to really piss me off!
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update: 3Mar97
Well so much for that relapse. after my third course of solumedrol, my legs are
back and working again. I played vball the other night, and I was in tip-top
shape, except for a messed up ligament in my knee... DOH!
And I did decide to get the supplements that Lilian Posten had prescribed for me a
few months ago - oh a little about Lilian - she was very hightly recommended to me
and so I checked her out, even though the appt cost me like $70! She is a
non-medical doctor, performing, among other things, Contact Reflex Analysis. She
did this for me and said that I had a "Tired Heart." and prescribed two
supplements: Cardio-Plus and Betaplex E2. well I just started taking them, and
you know what?
I am down to 160 lbs, my target weight, I am sleeping wonderfully, and a new
relapse seems to have passed me over! My right hand was feeling chilly, but that
has gone away now. I DO, however, still have a little bit of L'Hermitte's
hanging around... grr.... but my hand is fine, and that is very reassuring. Now
I just need to get back in gear academically...know what? It's hard to study much
when you are concerned about the future of your motor abilities!
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update: 19 April 1997
Oh goody - another relapse. This time, Optic Neuritis again. and my legs
feel funny - about 85%. I put off the Meds for a while, but then
eventually my doc and my mom got me to do another round of Solumedrol.
Done two of three doses so far, and improvement has been about 50%, which
I expect to go up to 90 or so in the next few hours.
Here's the deal - I had three things going for me this last time - Avonex,
Lillian's Supplements, and a low saturated fat diet. so much for the
diet - downed a whole box of oatmeal cream pies and also missed a
l o t of sleep. That's no good. But I've got a
heplock sticking out of my arm now - on the THIRD try! :( - and final
dose is tomorrow afternoon. woohoo.
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update: 9 Jun 1997
ON came back in my left eye. Same eye as my relapse of April. This time,
I was too tired of medicine to bother the docs about it and decided to
just ride it out. It wasn't all that bad, and there wasn't anything that
I couldn't do...there were things I couldn't do as well, but I
wasn't incapacitated in any manner. Oh, I started self-injecting the
Avonex recently. It's not a big deal at all. Oh, this episode started
around 20 may if memory serves, and it is about 80% better right now.
vision fogs sometimes when I am exercising, but it really isn't too bad.
All of my episodes seem to be getting less severe. This is one of the
advertised benefits of Avonex, so that's good. Oh, I also started going
to an MS group locally. It was ok; I was the youngest one there by 21
years!
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Update
update: 19 Aug 1997
ON strikes again. one month ago today, on my way down to Virginia. I
again decided not to treat it, but eventually I wanted to. Sadly enough,
it was too late. you have to treat ON within a few days of onset, or the
treatment has little effect. So that is why the last case got better so
slowly.
Now I have redone my nutritional approach. dumped Lillian and
am now taking one Capsule of Dale Alexander's Fish Oil and one of
Solgar's VM-75 multititamins. And
here's the big news: I'm dropping Avonex. I don't
like sticking myself with needles, and I keep having exacerbations once a
month! I don't like the results I'm getting from these guys, and so I am
looking elsewhere for now.
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update: 12 Sept 1997
So much for that plan. Nobody at all agreed with my abandonment of
Avonex. I realized that what was really bugging me was the fucking
needle. -shudder- So I'm back on campus now, and getting the
injection every Tuesday from Donna, who rocks and rolls. I have really
come to appreciate competent people in the medicine field due to this
disease.
So anyway, look back at my cure page to see the new regimen I'm on. oh
current problems. My left eye still fogs when I get hot, but it's usually
quite normal. And the temperature at which it fogs seems to have been
decreasing lately.
I've been doing a great job of eating my veggies lately.
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update: 1 Oct 1997
Just injected Avonex shot #4 of my second go-round with this stuff. (My
first run lasted for about 22 shots) so I'm up to-what- $52 of avonex?
Sorry to those of you who have to pay more; I have a wonderful HMO that is
mostly covering the cost of avonex.
I just wanted to stop in and say hello, oh, that's right - this page was
just added to the indices at Yahoo!
so I wanted to provide another reciprocal link for them. And I wanted to
tell the world that I am doing quite well, still on my diet, not really
praying as much as I would like, but I have come up with a
religious worldview that I'm confortable with. And it includes prayer.
Actually, sortof a hybrid between prayer and meditation, but you can call
it either.
The only thing that is bothering me is an item that has been on my list
for about a year now - my feet get hot. I'm assuming this is MS related,
but I haven't found anyone who could cool them off. Lillian tried and
failed. So I walk around barefoot a lot.
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When you get Optic Neuritis, make haste to the doctor and get your dose of Solumedrol. You need to start the treatment within a few days or you risk permanent eyesight damage!
Have you ever been close to tragedy Or been close to folks who have Have you ever felt a pain so powerful So heavy you collapse CHORUS:I've never had to knock on wood But I know someone who has Which makes me wonder if I could It makes me wonder if I've never had to knock on wood And I'm glad I haven't yet Because I'm sure it isn't good That's the impression that I get Have you ever had the odds stacked up so high You need a strength most don't possess Or has it ever come down to do or die You've got to rise above the rest (CHORUS) I'm not a coward, I've just never been tested I'd like to think that if I was, I would pass Look at the tested and think there but for the grace go I might be a coward, I'm afraid of what I might find out (CHORUS)
OK ok I'll get down off the pulpit. This is most likely my last entry into this log. so what's up with me - I'm still on my regimen of good diet, multivitamin and Avonex (self-injecting these days), and I'm now leaving for the sunny shores of California to make my mark on the world. Wish me luck! And good luck to you! Thanks for reading; hope it serves you well.
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to keep going, go to Rhode Island!
Dylan W Humphrey
Swarthmore Class of 1998