Home » The Longest Six Months Of My Life - part 1

The Longest Six Months Of My Life - part 1

Posted: Saturday, May 14, 2011

by Jon L. Wegner

I haven't written to the SearchWarp site for awhile. I hope to start writing again. My multiple sclerosis has been up and down and I just haven't felt like writing. For that matter, I haven't felt like doing too much of anything. I also moved to West Fargo, North Dakota in June of 2008. I know that was three years ago but the move took alot out of me and my MS. It's nicer living in a bigger city though compared to the little town I was in before.

I was diagnosed with my multiple sclerosis (MS) in 1991. I can trace some of my symptoms back to 1978. It's been an interesting ride to say the least. I can hardly believe I've had it diagnosed for 20 years now.  My upper body is good, lower body is bad and even though I have some cognitive issues my mind is still here. I don't want any pity or sympathy because I've had a great life so far and hopefully it will continue. I'm writing this article in the hope that it will help others with this wonderful disease with the initials MS. Maybe it will even inspire some people to continue fighting. Most people don't die from MS but it can make everyday things more difficult to get done.  I also found a new clinic here in West Fargo that works with autoimmune diseases like MS.  I'll discuss it later in part 2 of this article. I'm 53 and I had the worst physical year of my life starting in July of 2010. In June I'd started taking a new drug called Ampyra. It's supposed to help patients with MS walk better and improve other things, too. It was working well and I was excited! However, one of the side effects of Ampyra is that it can cause exacerbations (a worsening of symptoms).

I had taken Ampyra daily for 4 weeks. My legs/feet were lifting up higher.  I could get into my van and my bath tub easier.  On July 12th I had an MS checkup and my PA thought everything was going along wonderfully! However, one week later on the 19th about 9pm I started having back pain along my waistline.  Exacerbation entered my mind but I'd just had that great checkup a week earlier.  It was the worst pain I'd ever experienced with my MS. I couldn't even lay on my back in bed.  If I did longer than 10 minutes I couldn't sit up. It felt like there was a 2x4 along my spine. I thought to myself "what's going on here?"  I waited one more week and then I decided to go back to the PA and see what was up? We determined that it was an exacerbation and I should quit the Ampyra.  It was exactly two weeks after my legs/feet had been feeling so good that I was now mired in an exacerbation.  My previous exacerbation had been in March or April of 2008 so I guess it was time for another one but after feeling so good I didn't want one!

My walking has been getting progressively worse since 2007. This particular exacerbation last fall took what walking I had left. I couldn't move my feet an inch. It felt like my feet were in ten pounds of cement! I couldn't use my walkers because I couldn't lift my feet up!  I have my scooter which I can use to do everything like cooking, cleaning, laundry and my shopping if I need it. And in the second half of 2010 I sure needed it. I ended up riding my scooter inside my apartment and out for four months. When I moved to West Fargo I must have been thinking ahead for a change because I'd set my apartment up so I'd be able to ride my scooter everywhere inside the 700 square feet. If I did have to go somewhere in my apartment where my scooter didn't fit I had to lean on tables, kitchen counters, my bed, just drag my feet or crawl on my hands and knees.

My fatigue was also at an all time high. I was just plain tuckered out everyday after doing nothing at all! I always tell people that if I was a horse they'd shoot me! lol Luckily, I haven't lost my sense of humor and I hope I never do! Over the last 20 years I've always had fatigue with my MS. However, last year I'd wake up tired even after a good nights sleep. I was taking naps of 30-60 minutes twice a day. Multiple sclerosis fatigue can hit a person at anytime and anywhere. When it hits me I just want to lie down and close my eyes. My fatigue can last anywher from 30 minutes to 3 hours. Then it will end as soon as it came on. Weird stuff!

In the past whenever I'd had a bad exacerbation I could go always go in to see my neurologist and get hooked up with some IV steroids. That would get me walking better and help with the fatigue. I did steroids during this exacerbation but this time they didn't help at all. Two weeks after completing the steroids I still couldn't lift my feet up to drive my van or use my walkers. That was my biggest problem! I couldn't drive my van! During all my previous exacerbations I could always count on driving my vehicle but this time I couldn't. When the calendar turned to the second week of October 2010 my mind started whirring as to what I was going to do. Luckily for me, we had a great August and September 2010 so I was still able to scoot down to the convenience store to buy food items. Stay tuned for part two.

Jon Wegner is a resident of West Fargo, ND. He's lived in ND for 8 years after being a lifelong Minnesotan.  Jon has had diagnosed multiple sclerosis for 20 years. He writes articles about his MS for the internet. Jon has a business at http://scooterjonsasn.com  Jon has a blog at http://multiplesclerosis-scooterjon.blogspot.com/
Jon's e-mail adress is jwegner58@gmail.com if you'd like to chat about anything.

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