My Course and Current Condition

Fourth of July, 1995. I was home for the summer and none too happy about it. I had fallen in love while at school and my heart's captor had suddenly realized that we were not meant to be. She hadn't told me yet, either. Ouch. So to take my mind off of her, I picked up a dishwashing job.

Sagg's Bar and Grille. I picked up the trade in a couple weeks and was wowin' 'em all. I was mainly in charge of the dishwashing, though I did some prep cooking too. One saturday, one of the cooks did not arrive for work. So I had to go on the line and help with the food. The Kitchen was hectic and I had little idea of what was going on; I just tried to keep up as best I could. I remember one of the cooks at one point saying, "Holy shit. I got double vision ovah heyah." Wow, he was stressed about doing a good job on this food. I was too, though I didn't really know how to.

That night, I drove home in a catatonic state. I had to stare at the taillights in front of me in order to stay on the road. I did manage to get home and in bed, though I don't really remember all of that. (The boss was pouring beers for the other cooks, but none for me!)

I woke up the next afternoon. I blinked. huh? I couldn't see out of my right eye. Hello Optic Neuritis inflammation of the optic nerve. After a few days, I went into the Opthalmologist and she diagnosed me as having ON and prescribed a battery of tests, including evoked responses, EKG, and MRI. The news? "You might have multiple sclerosis, or it might be something else." What it was was a single sclerode, so the diagnosis of multiple was just not possible.

Well cool, then. They put me on Solumedrol for three days and the ON just vanished. Tingly sensations appeared intermittantly, though, throughout my back mostly. They came and went. I am a tinge of a hypochondriac, but my neurologist assured me that they were unrelated. I think he was wrong. I also had some benign positional vertigo the previous april, which I now feel was related. But whatever! The episode was over and done with and I got back to pining over lost love.
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Part II: Flare Two

Life went on. I got dumped officially and got over it, then about a month later found the love I had been looking for. I started dating my best friend. smartest decision I ever made. Tingly spots seemed to go away, too! Life was so good.

You knew that was a set-up, right? :) well in the second week of November, 1996, I had my second big-ass flare. At first the soles of my feet were numb, then the numbness spread to my calves and my right hip. soon it was in my right quadricep and knee, which made walking interesting and playing sports impossible. I went into "get shit done" mode and found a neurologist in the area and made my HMO agree to pay for the visit. He checked me out and listened to my problems from before. He wasn't afraid to make the diagnosis. For that I thank you, Norman Leopold; there are many people suffering from MS whose doctors have not diagnosed them - so as to what? protect them from the emotional baggage of having an incurable disease? What's wrong with them, then?! I think that is terrible. If someone has multiple sclerosis, you should at least tell them that they have it, so they can deal with it. Not being able to feel your legs and not knowing why is worse, IMNSHO, than knowing you have MS.
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Part III: What Flares?

So now I have multiple sclerosis. Oh wait, first the treatment. More Solumedrol. 1250cc this time, over five days. Made it possible to pull consecutive 2-hour and 5-hour nights preparing for a presentation. (Solumedrol is a steroid, which gives one lots of energy and such) The numbness went almost totally away by the end of the treatment, though the numbness in my hip lasted for a little longer. The Craziest thing about this attack was my mood. I was psyched! I had never before felt such overwhelming love for everyone I saw. NOT erotic love, either! The purest, most wonderful love I had ever experienced, and I felt it for everyone! Random strangers, old friends, old enemies... Quite the religious experience.

Those feelings are still with me now. I feel that my MS was a necessary step for me in my spiritual development. I feel that I am still well on my way to taking control of this wonderful world. I have always had a sunny look on life, and now, why I know not, my outlook is even sunnier. If you have had a similar situation when confronted with a big-ass disease like multiple sclerosis, then hey brother! Hey sister! This is our planet! I love you all!!!
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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: 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.

I have become convinced lately that it is exercise that can curb one's MS, as long as one has R/R MS like I do. Some disagree with me, saying that the extra heat only worsens symptoms, but I have not found that to be the case. I feel great and haven't had any problems since my diagnosis-creating attack back in November. Let's hope this keeps up!
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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: 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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update: 24 Jan 1998

Symptoms. a mixed bag. My hot-foot problem has been gone for the past few months, which is good. The L'Hermittes deal hasn't been noticeable since the last time I mentioned it here. My general health is pretty good, although I need to get into shape for volleyball season. I dropped my only MWF class, so I should have some extra time there to work out.

Tics. They seem to be popping up with a bit more regularity than usual. I mean, I've had these things since I was in elementary school, and tics are experienced by most of the human population, so I don't know if this should be a worry or not. I will pick "not" for now. :)

I'm still on my Avonex-cod liver oil-multivitamin-prayer routine. I'm currently worrying about how I'm going to get medical coverage once I graduate from college and my parents' insurance company drops me. Perhaps I will go back to my "no avonex" stance? kinda silly to do that just cus I can't afford it, though, isn't it? well I hope you all have a great defrosting season!
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update: 21 Feb 98

Hey have you heard the news? MS cuts nerves! chops right through 'em! The news has been met in many ways; personally, it made perfect sense. Some people have R/R MS, which shows symptoms appearing and disappearing, always with almost 100% improvement. This, I think, is related to someone's myelin getting eaten away by renegade T-cells; a process that is very well documented by the medical community. But some people don't improve. Why is the myelin not regenerating? Well the myelin is regenerating, but the nerve is no longer whole. Jumping to an electrical cord analogy, a power cord is of little use if its insulation is stripped, but of no use at all if it is cut. So the chronic progressive folks are having their nerves sliced. That is a very frightening prospect to me.

So anyway, that's the news. myself, I continue on the fish oil-multivitamin-avonex deal, and it has been seven months since my last relapse. That relapse, a bout of ON, is still haunting me, as vision in my left eye is about 95% of my right, and this drops to about 50% when I am exercising. That's why it's good that I play Volleyball, since it's not an intense aerobic sport. So my eye doesn't fog out too much.

Current new symptom: spasms. Finally, I have a symptom enjoyed by so many other MS sufferers. It's in my hands. Nothing bad, really, just rather ominous whenever it happens. I'm all holding out that this will go away, and become a L'Hermitte's-type, BENIGN symptom. Oh! and I have been really moved by the claims that extra sunlight helps out in this fight, so I'm changin my whole lattitude next year! off to California, and possibly Arizona soon after that. Get that Vitamin D, baby.
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update: 11 Mar 98

Okay, I want everyone out there to know something - I have to wear my glasses (which I have for an astigmatism) way more than usual, since the vision in my left eye seems to be permanently damaged. This happened because of the way I dealt with my Last Bout with ON I didn't get the solumedrol because the last time I had gotten it, the nurses kept messing up and had to stick me with needles (the big IV ones, too!) about ten times to give me one course of Solumedrol. So this time, I said FORGET IT. I figured my eyesight wasn't as bad as it had gotten before, so I would ride it out. That was a big mistake. So here is my advice to all you people out there:

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!

I should remind you all that I am not a doctor, I am just a person whose left eye doesn't see as well as it used to. I am glad that I still have my eyesight, but I still wish that I would have had more faith in the medical community that time. I learned THAT lesson. hoo-ah.
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update: 24 April 1998

DAMMIT! here I was, fine. no noticeable new problems for like a year, and POW. I realize some of you out there have gone for longer in between problems, but I'm just getting started here, and that year was my longest period of remission by a long shot. So my problem is really kinda minor, it's more the situation around it that is upsetting: I have one month of college left. A couple hard projects, two MAJOR presentations and a couple hard exams that I need to take care of. And now my left thumb and forefinger are all tingly. and now my forearm! great! I've had problems in this arm before. arg. heh, know what's funny; I have a presentation with my left hand more or less out of commission. The repetiveness of this disease is but one of this disease's annoying little facets.

Dawn woke up with tingling in her hand the other day, and I correctly diagnosed it as sleeping on it funny. Hm. maybe I'll look into my sleeping..? no - Dawn's problem went away in a few minutes. arg! Why does it seem like everyone's out to get me lately!? No longer a volleyball player, no longer an engineer, ARGHHH!

Oh, so anyways, what I was just noticing was that there is a song that really affects me these days - "The Impression That I Get" by the Mighty Mighty Bosstones. It's available here from CDNOW.com - it's been on the radio a lot lately. Ah, but the lyrics hold the key here - the thing is, it's played in that very happy, chipper SKA way that all of us MS sufferers need. Here's the words:

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)

As long as we're talking about songs, I should mention TUBTHUMPING by Chumbawampa - "I get knocked down, but I get up again..." and it's even more triumphant than this BossToneS song - I get so psyched when I hear tubthumping at a party - I just dance like no one's business and picture myself kicking the shit out of MS. Take that, MS!! (sorry, btw, to those that aren't R/R - tubthumping makes the most sense for us, but really it makes sense for everyone)

update: 22 June 1998

The hand's still a mess. well it comes and goes, I suppose. It's gone right now. I can still feel fine. well 80% of fine. And I saw the Opthalmologist - she echoed a lot of the things I've said here; keep yourself in good health - sleep, eat, etc. Also, keep a positive mindset. So many times, it's the people that give up on MS that end up succumbing to it. you've gotta keep a positive outlook on the whole thing. I will often say to myself, "It hasn't killed me yet." So if you're reading this, you can not only say that, but also that you can still read. dammit! And you will probably be able to read and everything else until you kick the bucket, so go out and do something! And you will forget about your problems. and don't do that with beer. Some people just love to party, but it's just not good for those with ms.

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