Multiple sclerosis
Road Warrior
Joined: Dec 2008
Posts: 1,250
Likes: 0
From: París, TX
I strongly agree with uklauren and Ron750. I had a good friend who had an aggressive course, and died at 35. He insisted on graduating med school, tho. And my sister had a very gradual course, and died in her 50s of unrelated cause. I have been impressed by reports of much more effective diagnosis and meds. And you may have to take a break from riding if you get flares that affect vision or balance. I
wouldn't sell the bike, tho! All the best.
wouldn't sell the bike, tho! All the best.
Last edited by Xube; Mar 14, 2013 at 07:17 PM.
6th Gear
Joined: May 2012
Posts: 12
Likes: 0
From: oriskany,ny
I was diagnosed about fifteen years ago. Two years ago I had to get rid of my bmw k1200 because I couldnt get my leg over the saddle and dropped it a few times because of the riding position made it difficult to get my feet to the pavement. A sportster with 26 inch seat height and forward controls took care of that, but even a small bike like that is sometimes tough to wheel around. MS is a bitch, it just reminds you every day something is wrong. God bless you!
Tourer
Joined: Jan 2012
Posts: 321
Likes: 1
From: St. Louis Mo
All cases are different. Some folks do well for years and some don't fare as well. The heat definitely is a factor in relapses and should be taken into consideration.
A doctor that has experience with the disease is your best buddy even if he doesn't always tell you what you want to hear.
There are meds today which will help you avoid exacerbations and that is the best help. Every time my wife had an attack she came back with less muscle control. Sometimes a big loss sometimes not much at all.
Just do anything to avoid an attack which means perhaps no noonday riding in the sun when it's hot as hell or riding very early or late depending on temps. out at the time.
You'll have to make the decision on whether you can ride etc. on your own. Just be careful not to push yourself and be stubborn about it. There may be more folks affected than just you if there's an accident. All the best luck to you.
A doctor that has experience with the disease is your best buddy even if he doesn't always tell you what you want to hear.
There are meds today which will help you avoid exacerbations and that is the best help. Every time my wife had an attack she came back with less muscle control. Sometimes a big loss sometimes not much at all.
Just do anything to avoid an attack which means perhaps no noonday riding in the sun when it's hot as hell or riding very early or late depending on temps. out at the time.
You'll have to make the decision on whether you can ride etc. on your own. Just be careful not to push yourself and be stubborn about it. There may be more folks affected than just you if there's an accident. All the best luck to you.
Thread Starter
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Supporter
Joined: Mar 2008
Posts: 4,419
Likes: 90
From: Vermont
Thanks for all of the replies. From what I'm gathering, MS affects each person differently. I'm not sure what may push some to that brink while leaving others potentially unscathed? As to the question about eyesight, yes, that is the event that led to all of this. Left eye went black half way then completely with a lot of pain. My eyesight in the eye has come back but its not what it was. In fact its quite poor. The Ophthalmologist diagnosed optical neuritis. Many tests later and now they want to confirm with the MRI.
Club Member
Joined: May 2007
Posts: 145,895
Likes: 821
From: 40 miles Northeast of Indy..
Wife has had it for 13 yrs now and as U said, it took 2yrs of testing to make sure what it was.
Her reg EYE dr first noticed some problems.
Now she don't/cant/never did ride her own, but she rides with me 95% of the time..
Usually hits the eyes in some way, and in most cases it can cause balance issues, still every case is diff..
She still drives her car but only in town. Hi-ways at fast speeds really messes up her depth perception.
She also is now on Gylina, the pills.
A lot easier than taking a shot every day (Copaxone) that she was on for YRs.
Best to get with a Nuro Dr and get on meds ASAP..
.
Her reg EYE dr first noticed some problems.
Now she don't/cant/never did ride her own, but she rides with me 95% of the time..
Usually hits the eyes in some way, and in most cases it can cause balance issues, still every case is diff..
She still drives her car but only in town. Hi-ways at fast speeds really messes up her depth perception.
She also is now on Gylina, the pills.
A lot easier than taking a shot every day (Copaxone) that she was on for YRs.
Best to get with a Nuro Dr and get on meds ASAP..
.
Last edited by oct1949; Mar 15, 2013 at 06:42 AM. Reason: added
Stage II
Joined: Dec 2012
Posts: 2
Likes: 0
From: indiana
I was diagnosed with MS about 15 years ago. I am now 52 years old. MS affects everyone differently. I have ridden motorcycles off and on since I was a teenager. A few years ago my wife said she mssed riding and bought herself a Fat Boy and asked me to ride it home for her. I had not ridden in about 9 years and it was a 70 mile trip home. I WAS SCARED SH@#LESS! When I finally got her new bike home without any scuff marks, I realized how much fun I had been missing. I bought a Harley myself and strated riding again. I am now on a 12 Road King and have ridden 12,000 miles in the last year. Before I brought my new FLHR home, I had the dealer install bag guards, Tall Boy bars, Tall Boy seat, Extended reach foot controls, etc. and I purchased some good leather (FXRG). I have dropped my bike a few times and lived through the embaressment. Heat hass a negative impact on me so I take frequent breaks and use a Frog Togg cooling rag around my neck when it is hot. Because of the MS, I was able to retire from my law enforcement career, start a new career that I love, make more money, buy a Harley and I have met some GREAT people. I have been to China a couple times to see my Son that lives and works in Beijing and am planning a trip back to ride motorcycles with him.
DO NOT ALLOW YOURSELF TO FEEL DOWN ABOUT MS!!!!!!!!!!!!!!!!!!
DO NOT ALLOW YOURSELF TO FEEL DOWN ABOUT MS!!!!!!!!!!!!!!!!!!
Thread Starter
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Supporter
Joined: Mar 2008
Posts: 4,419
Likes: 90
From: Vermont
I was diagnosed with MS about 15 years ago. I am now 52 years old. MS affects everyone differently. I have ridden motorcycles off and on since I was a teenager. A few years ago my wife said she mssed riding and bought herself a Fat Boy and asked me to ride it home for her. I had not ridden in about 9 years and it was a 70 mile trip home. I WAS SCARED SH@#LESS! When I finally got her new bike home without any scuff marks, I realized how much fun I had been missing. I bought a Harley myself and strated riding again. I am now on a 12 Road King and have ridden 12,000 miles in the last year. Before I brought my new FLHR home, I had the dealer install bag guards, Tall Boy bars, Tall Boy seat, Extended reach foot controls, etc. and I purchased some good leather (FXRG). I have dropped my bike a few times and lived through the embaressment. Heat hass a negative impact on me so I take frequent breaks and use a Frog Togg cooling rag around my neck when it is hot. Because of the MS, I was able to retire from my law enforcement career, start a new career that I love, make more money, buy a Harley and I have met some GREAT people. I have been to China a couple times to see my Son that lives and works in Beijing and am planning a trip back to ride motorcycles with him.
DO NOT ALLOW YOURSELF TO FEEL DOWN ABOUT MS!!!!!!!!!!!!!!!!!!
DO NOT ALLOW YOURSELF TO FEEL DOWN ABOUT MS!!!!!!!!!!!!!!!!!!
Thanks so much for your input! I'm not one that gives in to anything easily, but some of the comments have been scaring the bejeezus out of me. If I lose my ability to ride or to wrestle, ride dirt, hike fish etc with my boys I might as well be pushing daisies! Thanks again.
Road Master
Joined: Feb 2010
Posts: 884
Likes: 0
From: n
Saw your thread yesterday and wish you the best. I saw this article this morning and thought it might give you a boost.
http://espn.go.com/dallas/nba/story/...iple-sclerosis
http://espn.go.com/dallas/nba/story/...iple-sclerosis
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Thread Starter
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Supporter
Joined: Mar 2008
Posts: 4,419
Likes: 90
From: Vermont
Saw your thread yesterday and wish you the best. I saw this article this morning and thought it might give you a boost.
http://espn.go.com/dallas/nba/story/...iple-sclerosis
http://espn.go.com/dallas/nba/story/...iple-sclerosis
Road Captain
Joined: Apr 2010
Posts: 515
Likes: 3
From: Tipp City Ohio
+1
My wife went through a depressionary period but bounced back and boy did she ever.She is now more focused and carefree than most women I know.
MS was one of the big reasons she started to ride.She wants to tackle things that made her nervous before and even with MS,she's loving life more than ever.
She's my inspiration.
My wife went through a depressionary period but bounced back and boy did she ever.She is now more focused and carefree than most women I know.
MS was one of the big reasons she started to ride.She wants to tackle things that made her nervous before and even with MS,she's loving life more than ever.
She's my inspiration.