My name is Jon Wegner aka Scooterjon. I live in North Dakota, USA after being a lifelong Minnesotan. It’s hard to believe I’ve lived in North Dakota for 15 years. I write articles and a blog at scooterjon58.com. My blog is about my disease which is Multiple Sclerosis (MS). I was diagnosed in ’91 at age 33.
I’m not a doctor and I don’t give advice. I just know how my MS has made me feel for the past 27 years! Beginning in January of 2000 my MS has progressively gotten worse. Then in November of 2011 my MS turned into a real life changing disability.
My neurologist now considers me to have Primary Progressive MS (PPMS). More MS lesions were found on my spinal cord in October/November 2011. Those lesions are disrupting all body functions below my waist.
I always thought the loss of my legs was the worst thing my MS could do to me. However, in July 2016 I started losing control of my bowels. Losing bowel control has really messed my head up. I’ve had anxiety problems since the 1990’s but losing control of my bowels has made my anxiety even worse! Not knowing when I’m going to have a bowel movement has also turned me into a part-time recluse. I spent the winter of 2018 inside my apartment which I know isn’t good for me, either.... Read more at scooterjon58.com
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Iben, thanks for your thoughts! I hope my blog doesn't sound like I'm feeling sorry for myself because I'm not. I actually have a pretty nice life! I don't have to work anymore, I have a great wife, I have no debt with money in the bank.
The only things I can't do are alot of traveling, going to sports and concerts and stuff like that. Fortunately though, I did most of that stuff when I was single before I got really sick.
My neurologist took me off Copaxone so I'm not taking anything for my MS specifically. I am taking pills though for fatigue, clonus (shaking) and an anti-depressant. I'm also still on the north side of dirt! lolol
scooterjon58 Did your neuro want to put you on a different DMT? There is no waiting time with Copaxone to switch. I was on Copaxone since 2006 (daily and then 3 times a week after that came out) but was tired of needles and ran out of spots to do injections so after doing my research and then talking to my neuro I am not on Tecdidera. I have been doing good on it so far. I have an MRI on Wed to make sure I don't have any active lesions going on.
Mom, my neuro took me off Copaxone and didn't have anything else to switch to. I just assumed I was being put out to pasture. lol I have since started an exercise program which I hope makes me feel better. I'm losing teeth and it says online that steroids might do that. I did alot of IV steroids in the '90s for exacerbations. Someone on this site also said Copaxone will affect teeth. I have more MS talk at my website, scooterjon58.com Thanks and take care!
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What would be the first thing you you do if you were free from MS?
Hey 👋 trouble with diagnosis 
Secondary Progressive MS
Introduction to a new life
Hello, I'm new here :)
