I'll start by saying hello to everyone that skims these forums. I've been creeping through here for a while but never had the ambition to post anything. Since the development of this CCSVI treatment and all the other new drugs going through trials I wanted an excuse to visit here more.
My name is Dan and I started having symptoms when I was 20. I was your usual 20 year old male living in the rural areas. I was all about sex/drugs/alcohol and usually being completely irresponsible. I was a carpenter's apprentice with a rock solid 185lb build. I didn't have anything to worry about. Then it all started. What I think caused it was a 12 foot drop on my head during a bmx stunt gone wrong. I didn't ride bikes but I liked knowing I could. The next day I woke up and went to work feeling fine. We were standing up trusses on a house in campbellford and we stopped for lunch as usual. After eating I just started throwing up. I couldn't keep anything down. I went home and had nap but when I woke up my entire right side was pins and needles. I originally shook it off as sleeping funny but 3 hours later I decided it was time to get checked out. Then I spent a year going through the usual regimen of testing and knocking out every other possible dysfunction/disease/deficiency possible. Finally after a lumbar puncture, I was formally diagnosed. The first year before I started medication was absolute hell. After the lumbar puncture I was stricken with diplopia and nystagmus. I was absolutely terrified and it only went down hill from there. I didn't think I was going to be normal again. This first exacerbation lasted about 3 weeks. My personal life was in shambles. I was in between homes and my dad had just lost the house we were raised in so I had to ship out to London and stay with a girl I was a seeing at the time. This wasn't really that bad since the London University Hospital was a 15 minute bus ride. The staff and doctors there were incredible and always answered every ridiculous question I could muster.
A summary of the relapses in the first year: diplopia and nystagmus happened 4 times. Usually lasting 2-3 weeks. I went through l'Hermittes sign for a few weeks. This was just about as annoying as not being able to see straight. Not being able to look down without having a cattle prod shoved up my spine was ridiculous. I had motor skill and sensation loss that would go up and down constantly. Some days I had to pick up my right leg to get out of the tub and other days I couldn't move my hands fast enough to brush my own teeth. One relapse that wasn't so bad was losing the feeling below my breasts to my toes. Everything still worked fine but I had no sensation at all. Like somebody injected freezing into the lower half of my body. This happened in the middle of winter so I didn't have to deal with being cold. Although I wet my pants if I didn't rush home from the bus stop fast enough. Being in that nice warm bus then getting shot out into -20C made my bladder explode. Of course, with out the feeling I had a hard time telling it not to let it all go in my pants. I spent a few days with extreme vertigo and nausea. I couldn't stand the light and I couldn't stand up. I could only lay on a bed, in the dark of the basement, while my girlfriend brought me food and company. As long as she wasn't studying or in class anyway. All these relapses were treated with 3-7 days of solumedrol injections. Followed by a prednisone taper. I'm sure you are all quite familiar with this. I absolutely hated the taste left in your mouth from the solumedrol. It was like sucking on an aluminum lollipop. It's something that can quickly sour the joy of a nice cold glass of milk.
Since temporary disability was hardly giving me a dime. I started working full time at Stream in London. I'm not sure if anyone has worked in a call centre before and I'm sorry if I offend anyone that considers it their career calling. That place slowly killed me from the inside. It was filled with the confused people that could never actually decide what they wanted to be when they grew up. Failed attempts at college/university and a whole lot of resentment for anyone that had a different opinion. Don't get me wrong though. That wasn't all the people. Just the ones that wanted everyone to know who they were. I spent 8 months in that hole. Dealing with this disease and trying to keep some sort of sanity. I lost 35lbs in about 2 months. The stress was killing me and I couldn't keep an appetite. Not only that, but going from 10-12 hours of hard labour every day then going to every day on the couch with a laptop wasn't much of a positive lifestyle change. Fortunately my metabolism is quick and I only lose weight instead of gaining it. It's very depressing when you look in the mirror and realize what your bone structure actually looks like.
Eventually I was accepted into the Trillium program and put onto Avonex. I started with the kind you have to mix yourself. I was warned immediately about the side effects but I figured if it would make these relapses stop. I was going to try just about anything. They were right though. I had about 4 hours after an injection before my bones would start to ache. Than the fever would boil my blood. Followed by the most intense chills and uncontrollable shaking. I now you can relate when I say that with 10 blankets pile on top of me. You could control the shakes and calm down a little. If you were to get the smallest wisp or draft of air under those blankets. You're sent back into the tumbler for another roll of the cold dice. Once the joy of that subsides you spend another day with a fever and a body that feels like you're recovering from a harsh bout of the flu or pneumonia. I think it was probably this extreme for about 6 months than it started to get better and taper off. After 2 years I could get by with just a bit of ibuprofen. Then the last 2 years have been hit or miss on whether I it bad or not. I haven't been able to narrow down why but I know if you drink a few beers on the day of your injection you should look forward to a rough night. I know a lot of you are saying that I bring a lot of this on to myself. Since day one I've told myself that I own this body and I own this disease. So far, +1 for 'Positive Thinking'.
All in all, during the time I've been on avonex I haven't had any recurring relapses. I had a small one when my first son was born and I didn't even realize until after. My hip started off being sore than after a week my right leg wasn't keeping up with my left. It didn't interfere with much and I was too obsessed with the idea of being a father than to care about what was wrong with me.
A fast forward to today. I'm going in to see the neurologist tomorrow for my yearly check-up. I haven't taken the avonex in 3 weeks from fear and I don't have time to be sick right now. My new job which is paying well is needing a lot of attention lately and I can't afford to lose a day. If I work 5-6 days a week and I'm sick for 1-2. It doesn't leave much time for family and they hate me for it.
This is my story. This is the first time I've written it all out. It feels good to see a community of people that can relate and theorize about the disease and stop the loneliness in its tracks. I am one of the more positives cases of MS and I cannot even begin to comprehend the amount of stress that would have to be consumed to live everyday life if I developed into a more severe case. This disease changes how your eyes perceive the world and the daylight will never be the same.
Thanks for reading. Hopefully I don't get bashed too much over this. lol