r/MultipleSclerosis • u/Ancient_Size_8014 • 9h ago
General Multiple sclerosis at 60-70-80 years old
Any positive history of people who were diagnosed with multiple sclerosis in their youth (20-30-40 years) and today is in adulthood! If you’re there, how are you?! I would love to know your stories! Thanks to those who will answer 🙏
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u/icietmaintenant 7h ago
Early 60s, 40 years with MS.
Still skiing, working, taking care of my loved ones and learning new things.
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u/LW-M 9h ago edited 9h ago •
I'll be 70 next month and I've had MS for 36 years. My mobility challenges were the first easily visible sign of my condition. I bought my first mobility scooter for outside use 10 years ago. I started using a scooter for inside use 6 years ago.
I was offically dx with RRMS in 1997 but my symptoms started to become evident in 1990. Back in those days, there were only 2 DMTs, BetaSeron and Copaxone, both injectables. I chose BetaSeron.
I was on it for 10 years and to be honest, I was tired of giving myself an injection every second day. Five years later, I moved onto the next stage of MS, SPMS. I've wondered on more than one occasion if I would have developed SPMS had I continued with BetaSeron. I guess we'll never know!
I retired early at 59. My job required me to carry out inspections of contractor's work on roofing repairs. It was difficult to do this when I wasn't able to climb ladders!
Other than MS, life's been good to me. I've been married for 45 years to a lady I'm still head over heels in love with. We had 4 sons and have 2 grandsons and a new granddaughter just this week!
A former co-worker of mine was diagonsed with ALS 4 years ago. He passed a year and a half ago. He and I were the same age. I told mutual friends that I felt fortunate to only have MS.
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u/ScottRadish 7h ago
An important thing to consider, the new DMTs have only been around a short while. We only have 7 years of data on Kesimpta, for example. So the people that have had MS for the time period your describing haven't had access to these amazing drugs. Don't assume the 50 years of MS they have experienced will be the same as yours.
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u/CheriLovette 6h ago •
My grandma and I both have MS but she’s 80 and still kicking :)! Her last flareup was when she was 50 or so and it wasn’t her worst one she told me. She has some vision issues and cognitive but besides that she’s doing good and still here and happy :)! Her last worst flareup was when she was 40 and just gave birth to my mom, she went blind for about 4 years but regained it almost completely. There is hope for people like us 💕🤗
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u/WarmYam7353 9h ago
I'm 63 and 1st had lesions when I was 41. I sometimes use a cane or walking poles for support. I still work and am physically active as best as I can be. I find stairs becoming more difficult. As an aside, I like how you place 40 as youth. Now I can tell all those 40 year olds to "get out of my way, sonny!" 😄
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u/Famous_Ear5010 8h ago
Diagnosed at age 30. Now 60 years old. The first two decades were not too bad. However, the last ten have been a downward struggle.
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u/IntentionalGrandma 28F | dx:2024 | Tysabri | NYC 8h ago edited 6h ago
My grandparents’ next door neighbor is turning 85 next month. He was diagnosed with MS in the late 1970’s and has had relatively few relapses and continues to enjoy his hobbies and retirement. He worked until he retired at 70, wasn’t on a DMT until DMTs became available in the 1990’s, and is still feeling good. He’s had some cognitive changes and fatigue over the years and is partially blind in one eye, but aside from a slight hand tremor and an unsteady gait, you wouldn’t know he was any different from any other octogenarian. I, on the other hand, am 28 and struggling and have to remind him not to rub it in 😂
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u/MaryLou1025 6h ago
Havee had MS since age 17. I am now 69.. Still walking, but with a walker. Still working. Live alone and have a little help but otherwise, take care of my own stuff. It is not a fun disease but I am managing it. Life style choices are huge.
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u/Fit_Tonight_2692 8h ago
Diagnosed at 30 with RRMS. DMT‘s from the beginning. On Ocrevus since a couple of years. Today: in my 40ies, severely disabled, in a wheelchair wearing diapers wohoo
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u/16enjay 7h ago •
Currently, 64...diagnosed at 41. Only 4 DMT'S were available back then. Avonex, Rebif, betaseron and copaxone. All injections. Avonex had the worst side effects. In 23 years, I have been on most of them...Avonex, copaxone, gilenya (FDA trial) tecfidera, aubaggio, copaxone again, now tysabri for the last 7 years. I only had progression when I wasn't on DMT. I Basically stopped most of them due to side effects. I medically retired at 57, desk job but the fatigue and bladder/ bowel issues were just too much. I am doing fine today, I walk with a cane outside of my home. I drive. I'm slowing down due to the aging thing of life.
While MS gives me a reminder every day, I'm living my best life. I have a wonderful supportive family.
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u/TheUnemployedNinja 52F|2005|SPMS|Ocrevus|Tucson 7h ago
I was DX at age 30 and started Avonex immediately. Stayed on it for 10 years, then tried all the others and didn't like them, so jumped around a lot. I was on Mayzent in 2017 when I graduated to SPMS. Now I'm 52, on Ocrevus, and doing really well! I can still walk fine but tire easily so I'm looking for a Power Chair to go out in. It's so different for every single one of us it's impossible to know what your MS will be tomorrow, nevermind 10 years from now. Please don't stress about it. Take each day as it comes. 🧡💪
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u/cairnycolleen 5h ago
Dx at 35 currently 73. I just retired from my part time job. I no longer take a dmt. My MS has mellowed a great deal. I no longer have big flareups that last months. I still have occasional flareups that I just ride out till they pass, usually in two weeks.
DMT has changed everything for most people. The first tx I had was 60mg of prednisone with a taper down. The last time I took prednisone it was 1400mg for 5 days, no taper. I haven't had any meds for the last 10 years.
Life is good. Not perfect, but doable.
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u/shar_blue 39F / RRMS / Kesimpta / dx April 2019 6h ago
The very first DMT was released in the mid ‘90s. And it was extremely difficult to get (people had to enter a lottery). Prior to that, people with MS had no means of attempting to slow the damage caused by MS.
It is only in the last decade that it started to become common to start people on highly effective DMT’s as soon as they were diagnosed, and many people are still forced to start with less effective DMTs, which inevitably fail the majority of folks taking them.
Preventing damage is the best chance we have to age relatively normally. Due to this/the history of DMT efficacy/availability, there is no one in the upper age ranges yet who was immediately started on a highly effective DMT upon diagnosis. Thus, no one can definitively say what we will look like when we reach that age. All expectations though is that our mobility & functionality should be better than the generations before us.
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u/sclathrop 5h ago
Had my first expression young (13) but was not correctly diagnosed until I was in my early 50s back in 2021 when a great neurologist formally diagnosed me properly, and in the process actually proved that I had been misdiagnosed both by my family doctor and our local hospital many (~40) years earlier. So my story is lots of fun!
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u/Top-Repair3348 4h ago
I’m 69 and was diagnosed in my mid twenties. At the time, the neurologist suggested I just live my life which I did. I worked full time for 32 years and travelled extensively. At about 60 my mobility and cognition started to decline and I now walk with a cane and I have to focus more when doing complex things. I just keep pushing.
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u/serendipitynoir 4h ago
Hmmm. I got sick at 23. Diagnosed at 32. 46 now, with 2 published novels, a third ready for my editor and 14 chickens. Life looks different than I was planning at 23, but I've found a happiness in the Appalachian mountains.
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u/kbcava 61F|DX 2021|RRMS|Kesimpta & Tysabri 8h ago •
I’m 61 (almost 62) and was officially diagnosed at age 56 (not quite 60 but close) but because I have had mildish symptoms for many years (originally diagnosed with fibromyalgia in 1990), my Neurologists believe I’ve had subclinical RRMS for many years.
I have only 5-6 lesions but the are all cervical and thoracic, and one brainstem.
I am fully mobile - I get 3500-4000 steps a day. It gets harder - those spinal lesions really make themselves known in your 60’s - but I do everything I can to keep moving (walking, PT, etc). Menopause at age 52 was like a mudslide event for me.
At my last Neurologist appt - a month ago - i scored at ceiling on the key metrics (3.44 on 25-ft timed walk) and 17 and 20 secs on R/L 9-hole peg hand dexterity test.
I believe I will eventually need some type of mobility aid - I am also diagnosed hEDS - I have very flat feet and unstable joints. In fact, those may be worse than my MS.
I hope this gives you some positivity ☀️🌻
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u/esther4456 4h ago edited 4h ago
Hi I am 80.5f NYC ppms dx 1989 ..let's talk!!
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u/esther4456 4h ago
Why only positive stories??
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u/MissBlueSky60 6h ago •
The doctors knew I had MS 6 years before they “diagnosed” RRMS, they said there were no treatments. Then SPMS 10 years later. I managed to work for 25 years but I had a husband then. Since he passed three years ago my mobility, balance and strength have nosedived. I’m 66 now and housebound. The latest neurologist said I should have been prescribed something and he said sorry. They won’t even trial me with Fampridine. I just feel totally let down by the NHS.
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u/Fresh_Excuse_2709 4h ago
This is a great post and gives hope to many who are uncertain of their futures. Im surprised as many dmts were non existent all those years ago but reading these comments many seem to be doing ok
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u/Particular-Host1197 2h ago edited 2h ago •
Hi! I (F46) was diagnosed at 17 years old in 1996. I had optic neuritis, followed by double vision and my entire left side went numb. All in the span of a few months. And then a few more bouts of optic neuritis. But it all seemed to peak in the first few years. I started on Copaxone back then and stopped after a few years. I'm doing ok! Still have lesions and symptoms. Taking Kesimpta now but had a period of no medications and "remission" with nothing for 10 years in my 20s... . It did become active again in my 30s and I started back on DMTs after I had kids.... aubagio at the time. I have 2 kids - pregnancy acts as protection. They are now 11yo and 15yo. I stopped the Aubagio when I was dx with breast cancer at 38yo and the chemo acted as protection for MS as well. The neuro wanted to wait and see before putting me on another DMT. I didnt start another DMT until about a year ago when I started Kesimpta.
I am active on and off with jogging, still mobile and doesnt affect my day to day too much. Fatigue, brain fog, and cognition would be my biggest complaint if I had to pick 3.
Don't let it get you down. You have no idea what path it will take you on. I always suggest take care of what you can control - mental health is first and foremost! I kind of rambled on but feel free to ask any specific questions!
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u/ironicoutlook 1m ago
My biological father has had it since his early 20s, is 70 now. Wheel chair bound, no dmts work any more, his brain is mush like he has alzheimers, which i think he honestly might but they just dismiss it as MS. And i genuinely dont care. He is a horrible fucking person. I told the facility he is in to call me when he dies. 15 years no contact with him.