old timers 34+ years

[7409]

Would like to hear from people with MS for many years. I have had MS for 34 years with all kinds of problems. I am somewhat ambulatory, I cycled 1,210 miles (stationary bike) last year, I use a walker, scooter to get around. There were no helpful drugs except reactionary steroids when I was diagnosed. And I've been on all kinds of drugs, Tysabri for 10 years. The bottom line is stay active, start medication ASAP and be positive.

[RoyceNewton]

ah ha somebody that agrees with me, I only have 20 years but you do give me something to aim for. Tanks very much.

[greaterexp]

Thanks for your post with its great reminders!

[Kenu]

Great Post 👍😊Ken 🐾🐾

[Ali_B62]

Only 32 years so far but luckily still quite active despite the fatigue which is my main symptom. Same here, when diagnosed the only treatment available was steroids and it 's too late in this country for me to take any DMD but still going and hopefully making progress.

[SueAB]

I believe you are right about exercise! I was diagnosed 31 years ago and am still active. I ride my 3 wheeled adult trike, walk with my rollator, lift weights and swim laps. Somedays it is harder than others and I'm sure it isn't very pretty, but I still keep trying!

[leking1]

I am coming up on my 36th anniversary of my diagnosis...May 2! Not a date I celebrate, but all things considered, I am doing ok. I can still walk on most days. I do use a cane. Mine is no longer relapsing/remitting, as it became secondary progressive 10-15 years ago. I think I've experienced every symptom in the book and then some, but I keep on going. It is so much more fun than the alternative!

[2Kiggy]

Diagnosed 25 years ago, but have had it for 41 or 42 years. Lots of sensory pain at some level every day. Still workout a few times a week (though nothing like back in 1990s), and do a Restorative Yoga once a week, and chill out in a salt cave twice a week. But, I don't always get all of this stuff in every week, if I am feeling too lousy. Have a couple of cats to cheer me up on real bad days.

[victory37]

You sound just like me, except I don't have a scooter (yet!). Staying positive is so important, plus I would add prayer! Do you like Tysabri too? I've had no side effects, for which I'm very thankful. I was diagnosed 37 years ago and it's been a lot of ups and downs: balance problems (I've fallen many times and broke my ankle one of those times with a long recovery in a wheelchair); bladder issues that drive me crazy; memory problems; and worst of all, burning pain in my legs. But, God gets me through each day and I try not to complain, too much LOL!

[Elizt3]

23 years. I agree, start on meds as soon as realistic, lots of exercise (even when one doesn’t feel up to it so much...at least some), reduce salt (I think that makes spasticity and neuropathy worse, and maybe even other symptoms?), figure out where you want to put your energy (for me, it’s [single] parenting and work—— so others help me with yard work, snow shoveling, and housecleaning), good sleep...lots of knowledgeable people on this discussion board—thank you!

[RoseySawyer]

Only a few years here but I exercise as much as possible and my infusion is every 6 months. My Neurologist is very happy since when she met me the first time I was paralysed. I am now walking and I walk as much as possible. (As much as my little legs let me. 😆) I agree that getting on meds at the beginning and exercise is very important. I try to stay on my feet as much as possible. 😊❤🌷

[sashaming1]

Diagnosed with MS about 32 years ago. Depression for the entire time. Balance issues. Weak left arm and leg. No other effects. Have taken Tysabri for 10 years and switched to the two sets of infusions of Lemtrada. Hope that's the last one.

[agate]

39 years ago I was diagnosed with MS. Can't say I'm working out in any noticeable way but I have a pedometer and my stepcount is between 1,000 and 2,000 steps a day. My MS began to be under better control after about 10 years but that was mainly because I was learning that I couldn't get away with much physical activity in any sustained way. I'm still learning that.

I sit in a wheelchair most of the time but when I walk I use a rollator, or take the wheelchair if I'm going any longer distance than a few blocks.

[eharoot]

thanks for discussion. 29+ yrs. getting more difficult to get around despite cane and rollator. I think some arthritis is complicating it all. not so sure where things are going now

[Hidden]

Have MS for 12 years I exercise 3 times a week ride a stationary bike lift weights plus I do stretching exercise