I have to apologize for not many articles in the past month or so. I've had a rough first part of 2008. On January 29th my computer suddenly and without warning froze up and I lost all my pics, documents and addresses for everything. Being kind of a computer novice I didn't know that this could happen! I've now learned alot about how a computer works and the need for backup hard drive. Anyway, it took 2 weeks to find someone close to me that could work on it and not cost me my firstborn! lol I got it back yesterday but I'm missing so much stuff and I'm trying to regroup. So please bear with me.
At about the same time as my computer problems 2 weeks ago I had what I'll call my worst ever exacerbation. The left side of my body suddenly went numb/tingly. It went up and down my left leg, the left side of my chest and back, both feet and my left buttock! It's hard to describe the feeling. It wasn't so numb that I couldn't feel a pin prick and it didn't feel like a leg that has fallen asleep. All I knew was that it felt stange to the touch. Then just last week I suddnely couldn't walk at all. I normally ride my scooter outside and use a walker in my apartment but starting last week I couldn't even navigate my walker in my apartment! My feet wouldn't lift off the ground. I could just get off my scooter to sit down on a chair. That's how far I could walk. I don't know how many of you have felt this way but it's a helpless feeling and many thoughts ran through my head as to what was going on.
Since I'm now considered to have secondary progressive multiple sclerosis and I was told I shouldn't have anymore exacerbations I didn't know what to think. I scheduled an appointment with my neurologist. I have a new neurologist and I guess she didn't think I was important enough to see so I had her physicians assistant look at me. I'm really getting tired of the American healthcare situation! But that's another can of beans to open at some other time. So my PA asked me some questions, poked me with a safety pin everywhere and I could feel it and tested some of my coordination. I asked him if I could still have exacerbations with secondary progressive MS and he said he wasn't sure. I may still have relapsing remitting MS because he said my MRI in August showed some unsettled areas in my brain where plaque could grow. I guess I'll have to wait and see what develops.
He scheduled me for three days of intravenous steroids which I completed yesterday. This is interesting. Medicare will pay for 1000 MGs of steroids if I took them intravenously. But I would have to go into the hospital to get the 1000 MGS. But they would only pay for 50 MGs if I took them orally! I live forty miles from the hospital round trip so I put on 120 miles over the three days. I get 15 miles to the gallon with my vehicle so I had to pay for an extra 8 gallons of gas at $3.00 per gallon or $24.00 because Medicare wouldn't pay for 1000 MGs of oral steroids. I'm not cheap but nowadays I have to watch my money and I didn't need to spend an additional $24 for gas. That's how I feel about that crap!
The steroids work quickly and as of now just one day from taking them I now have alot of the feeling back on my left side. And this morning I started using my walker again in my apartment which is good news! One thing that was difficult when my legs weren't working was this. I could only lift my feet about a half inch off the floor. I was having trouble putting on my underwear and jeans each morning. After a couple of days I figured this one out. I would grab my right leg and cross it over my left leg. Then I would hook my underwear around my right ankle. Then I would put my right foot down and pull my underwear up. Then I would grab the middle of my underwear and hold my left leg over my right one so I could hook my underwear over my left ankle. Then I put my left leg on the floor, stood up and pulled on my underwear. Then I did the same thing with my jeans. I hope this all made sense to you because it did work for me. Until you're in a situation like this a person doesn't realize everything that they take for granted on a daily basis.
Then I was worried about loading my scooter in my van. It's icey, snowy and slippery where I live and I knew the traction wouldn't be too good. I figured this one out, too! I sat down on the back end of my van and lifted the seat off my scooter. I have a real heavy seat on my scooter. I got that off easily and I have a lift in my van that does all the heavy work of putting my 300 pound scooter in the back end. When I got to the hospital I unloaded my scooter and then sat down on the back end of my van again. I parked the scooter close enough so I could hook my feet under the floor of the scooter and they wouldn't slide anywhere. Then I lifted my chair onto the seat post and away I went. I know this sounds kind of silly but I never had to do it this way before. When legs and balance don't work anymore a person has to think ahead to figure out how things can get done. I got it done and I've now eliminated some anxiety that I had about how I could load my scooter when my legs eventually quit working. Everything is possible and to date I've conquered all my challenges concerning my multiple sclerosis.
Jon Wegner is a 49 year old resident of a small town close to Fargo, ND, USA. He's lived there for four years after being lifelong Minnesotan. Jon has multiple sclerosis and his MS has taken his legs and walking in 2007. He now rides his three wheel electric scooter to get around. He can be seen scooting all over his little town daily. Jon's website, e-book, FREE newsletter and articles can be found at
www.mymsbookandnewsletter.com Sign up for his monthly newsletter there.
