Please do not get me wrong on this question. I have been googling to understand MS better since Neurologist's do not share much information
The google says disability in MS is INEVITABLE
What really is the truth, someone like me new to MS really needs to understand the facts so one can prepare themselves.
I hope you will help me understand this, you know this better than anyone else out there
It depends on the individual. Everyone with MS is different
Many do become disabled because of MS. You have people who are combined to a wheelchair, bed ridden, have memory issues, vision problems, etc. The list goes on and on. It also depends on the person’s mindset because they have given up
No one can really tell you what will happen to you for sure. Just stay on top of your health.
For me I have recently become disabled. I wish I had started medication when they told me. Then again when I started having symptoms I played the wait and see game because I listened to people who didn’t have MS and I didn’t immediately go to the dr.
This is just my story but I’m currently taking Ocrevus and I have started to improve, after each infusion. I am not only just depending on the medication, I’m also on an exercise program that focuses on MS. I workout with the MS GYM (themsgym.com), they have the free and paid membership. I started doing the free membership but moved to the paid membership because I wanted more of a structured program. With the free program I was all over the place. I also do physical therapy as well.
I went from walking normally, to using a cane, to not being able to walk for 14 days( right b4 this happened I was on my way to getting off the cane), to using a walker, now I’m back to getting back on the cane, and eventually off of the cane.
I hopes this helps you.
I encourage you to roam around the forum and read some of the post. Continue to ask questions. I/ We as a group learn something new about MS everyday.
That's wonderful to know. I really pray you get off the Cane soon and do post some pics post that. That would be so motivating for so many people here.
I would love to hear more from others so people like me can have more clarity of where this road could head. Though it effects everyone differently still it gives you a hint of how good or bad the journey can be
One more thing I do wear an afo called Bioness (bioness.com) both the thigh and calf brace for drop foot and weak hamstring . I also have the carbon fiber one that I wear in the house.
I do get fatigued but I have learned to manage it.
I agree w/ you.
I know I learned something "new",to me every day- including how to FINALLY accept "help", w/thinking "I know everything about MS"( I was an RN), to find out I really didn't know "everything" , afterall!!!!
Who knew???
🙏❤Lisa💕
I have been partially disabled for over twenty five years and have gradually reduced. I also have had two bouts with cancer ♋️, stroke, etc. But all and all I due really well 👍. Have a afo brace for drop foot and right hand very little usage. Still drive, clean house, mow yard, shop, etc. Able to go to football 🏈 games and other activities. Have to pace myself and moving slowly but plan ahead. If it was just the MS I think 🤔 I would be quite a bit better. Everyone is different and I push myself and keep doing things and that helps. I know several people that only have mild cases of fatigue and get around great and some wheelchair 🦼 bound and some have passed. Hope this helps you and makes a little more sense🙏😉 Ken 🐾🐾
hey Ken, really appreciate you taking time out to respond. It did make sense
waiting to hear from others about their experiences
There are so many bad sources on the internet spreading incorrect information. Sometimes it can be hard to tell if something is reputable or not. The Menzies Institute has an excellent course on MS, which includes a short class on determining whether or not a source is reputable. It's coming up in September.
Disability is NOT inevitable! Some of us may have some deficits in some areas, but now that we have very effective DMTs, complete disability has been greatly reduced.
Exactly, there is so less information about this & hence I bought up this topic here. it would be good if more people participate and write down their experience
GOOGLE my sibling is WRONG. Let me say that again, GOOGLE is WRONG. Disability is not ineviteable, define what you mean my disability. Again relax google is WRONG.
Let me 2nd and 3rd that!!!!!! 😭😭😭
I'll 4th that!!!
oh yeah.. google my enemy is notorious !!
Good to know this isn't a fact. Expecting more to share their views on this
The WORST thing a"neurologist"( if ya want to 📞 her a Dr) said to me was you are only gonna get WORSE!
Well, I've provin that wrong!!! Actually, my back pain , is sooo much worse!#$@:?!! Like RoyceNewton stated-define what you mean by " disability?"
Perhaps some direction in your searches would serve you better. Read research studies, not clickbait. MSAA has videos. Aaron Boster has YouTube video. I’m sorry you are having a hard time.
Maccy - I asked the exact same question that you did i.e. "Do some people with MS live unaffected", and lo and behold the exact same info came up - the line breaks in the sentence were even in the same place. However, the missing word was now showing onscreen. I can't paste an image into a reply as you can only do that with a new thread, , but I can assure you there was a typo in your search result i.e. the word "not" was missed out in front of "inevitable". Somehow the transcript that displayed from your search query came across with the error. You can read the actual "brochure" on this link below - it's from the MS Scocety of Canada, but note that it dates from 2014 so may have some slightly out of date info in it. The bit that you have quoted is on page 6.
mssociety.ca/uploads/files/...
You need to remember that you may not even have MS, so while your thirst for information is inevitable, and you are feeling very anxious about it all at the moment, you only have a relatively short time until your next neuro appointment, so you really do need to think about the bad effects that all this looking at MS stuff is probably having on you right now.
My stern advice to you 
is to stop asking Google and if you want proper information then start reading what is on the reputable MS organisations' websites. Stay away from the quackery of alternative "MS Diets" and other BS until you know enough to be able to make some informed and critical judgements - remember - you may not even have MS after all. And if you do then the best thing is still to do the online course that I suggested in a different thread and which greaterexp has also recommended above.
HI. I think I can tell you some facts. I am 73. I have had RRMS for 56 years. RRMS basically means the symptoms come and go. So to me that means disability is NOT inevitable!!!! I am walking proof. Am I disable? Well, I have a disability card on my mirror so I don’t walk so far when parking at stores - just got that 3 years ago! Backpacked the AT for 10 days when I was 52. Took “disability” with govt when I was 63 cause I had Major Sleep Disorder since childhood, Chronic bronchitis, and chemical depression AND MS, but mostly because the sleep disorder was making it difficult to get up at 7 am anymore. I have a friend who was dx with MS at age 35, yet her only symptom to this day, (45 years later) is trembling when holding a coffee cup. Yes, my cousin died of MS complications in her 50s 30 years ago because her doctor gave her no medicine for MS. Any of us could be struck by lightening tomorrow. So, dear one, don’t worry about MS. Eat very healthy, stay very active as possible, be positive, spread joy, love others all around you, love our Creator, and stay in peace with yourself. Laugh with us as we laugh at ourselves. You have a great life ahead of you!
My mum passed from ms at 47 and now I’m being investigated for it I have lots of lesions on the brain
I completely agree with everything you say
Diet and exercise is key my mum didn’t do this find a decent doctor and look after yourself it’s important xx
based on the text you provided, I'm pretty sure they meant "is not inevitable" . That said, we're all different, we each have our own MS, with its own course and evolution.
Studies are starting to come out showing that we some of the latest treatment they see no or slower aggravation.
I'm counting on the no progression. I'm personally feeling better since diagnosed and under DMT. so I'll call that improvement (no fatigue, no brain fog, no tripping,...).
Define MS disability on your terms.Despite the limitations MS has placed on my life, I refuse to consider myself disabled. Because I was 70 when I was finally diagnosed, I have never been prescribed a medication to slow the damage to my CNS, and though I have no new lesions, at 80, I am less able than I was at 20 or 70. But, though I have made modifications that make it easier for me to live as I wish to live, I consider myself able even at those times when I cannot do what I want to do when I want to do it.
I think of MS as I would a meteorite that has crashed through the roof to land in the middle of my living room. After repairing the hole in the roof, I've rearranged the furniture and learned to move around the immovable object. Define disability on your terms: find courage and inspiration in the many able voices on this forum, people who restore cars, build guitars, play harmonica, go camping, paint, crochet, roam the countryside, quilt, tell jokes, volunteer to help others.
I agree with your statement of "define disability on your terms." Some people may think memory lapses as disabled. Some may require a wheelchair to mean disabled. And anything in between! I try not to let labels trip me up. Some days I use my car disabled sign when my legs are weaker but most days I don't.
it all depends on how you approach the disability if you can maintain a good reasonable movement exercise regime is good i was doing good until i slacked off now i can't go anywhere without my powerchair please consult you doctor for further information
thank you
Hi Maccy,
We are all different. I was diagnosed in 1982, have never been on DMT and have fairly minimal deficits so far. Optic neuritis in my right eye and the usual heat sensitivity. My MRI is a mess though.
I have MS and am just shy of 50 (ouch). And I have a great aunt who has MS and is in her 80's. She has traveled all over the world and has also maintained employment for the vast majority of her life. On and off through out her diagnosis she has been blind, in a wheel chair, walked w/ a walker & cane, and had just about everything MS encompasses thrown at her. But she always rebounded well and her employment was never threatened.
I have MS and have had blindness in one eye (optic neuritis), numbness, headaches, legs that never stop aching from tight muscles and always feel like they're surely not strong enough to support me for much longer. My hands 'jump', my eyes 'jump', and my brain doesn't always keep up w/ me. I have regular mood swings and confusion/memory lapses....and a plethora of other occasional symptoms. That being said however, I am a very good natured, happy, "bubbly" and silly & intelligent person. My glass is always half full and the sun always shines on rainy days, lol. That's just me.
I have always excelled at my early jobs when I was young and have excelled just the same in my "adult life" career. I moved up the ladder quickly because I don't do anything slowly or half-a**ed. I have never had a bad eval. Just the opposite, which is why I have excelled so quickly. And now here I am today, about 10 years into my body going haywire and 4.5 years into an official diagnosis, and I wonder almost daily how the heck my aunt managed to NOT go on disability throughout her life. Because unlike her, I am not sure how much longer I can stay employed. With all of the 'inexcusable' errors I have made over the last couple of years I have had to insist on all correspondence be via email so I have a written "memory" to refer to. Unfortunately that only helps prevent about 20% of my errors.
I am overwhelmed by nothing in particular and have had to lower my head into my hands to breath and slow my emotions down to help me think w/out panicking (again, over nothing). Focusing or holding any train of thought for longer than mere seconds is now a thing of the past.
Bottom line?... Every person with MS is affected DIFFERENTLY. There is no rhyme, reason or set pattern. No specific or written schedule to which it affects any part of any patient's brain. It is random. I do remind myself again and again that everyone is affected differently and where one person may have cognitive disability, another may have physical disability, and yet another NO measure of ANY disability......
Take your life with MS one day at a time. With luck you may never see disability. I hope I didn't babble on too much. One thing that HASN'T changed w/ MS is my ABILITY to be VERY long winded! Lol.
Hugs & warm wishes,
Cassie
thank you for this note. Its helpful
By now you may have gotten some clarity from your doc I hope. Progression is not inevitable. We have each found a way around the disability to share with you. Prayer, a positive attitude and movement have been the secret sauce for me.
Not really. I have my next MRI in first week of December
So I gotta wait until then to have a definite diagnosis
I know that inbetween feeling. It seems to matter more to have a label To make it make sense But what do you do with this time is really important. More important. Are you exercising every day? Are you eating right sleeping well I’m doing everything you can to improve your quality of life? No need to wait for a diagnosis to do those things. You can start today
i have started concentration more on what i eat & how i live more than before. I know that's the best way out at current situation.
Alcohol - stopped, Smoking - stopped, Sugar - reduced in take, coffee - reduced in take.
Have some confusion around dairy products. I have read its good to give up dairy products.
I know that inbetween feeling. It seems to matter more to have a label To make it make sense But what do you do with this time is really important. More important. Are you exercising every day? Are you eating right sleeping well I’m doing everything you can to improve your quality of life? No need to wait for a diagnosis to do those things. You can start today
What I learned in 20 years living with MS
MS life with normal things...like the life
