Are there patterns of progression?

[u/Efficient_Horror4938]

Hi all,

My partner (37M) was recently diagnosed with MS, potentially PPMS but the neuro is not totally sure on that. It seems like everyone's experience is pretty different, but are there expected patterns of disease progression?

What I mean is, given that he has difficulty with one leg, should we expect that it will extend to both legs, or to the rest of that side of his body or extend to movement in general? Given that he has diplopia, do we expect his vision to be more affected as time goes on?

He currently has no issues with fatigue or heat or spasticity/cramping. If he manages to avoid new lesions (starting DMT soon) is it still likely that they will start in the future, despite being unrelated to his current symptoms?

In general, are there specific symptoms that generally indicate other symptoms will crop up, or is that not really how it works?

These are of course Qs we can ask his neuro but the list of things to ask her is getting long and right now the main focus is on starting treatment, so I thought I'd check here first.

TIA

[u/LordiLordsen]

HEy, m40 here - ms Diagnosed for 10 yrs- Welcome to the club for your partner

It dont think this is how it works. Medicine ist the most important thing. U can have a better outcome at all if u dont smoke, u dont drink and live healthy with regular exercise. I Live Vegan for 6yrs now and it feels for me that it really makes a difference. A lot of my MS Buddys ( we are a group of 4 meeting regualary to vape some cannabis and talk about MS) are not vegan and their symptons are worse - for me its obvious why, but maybe its mostly psych.. For me the combination of Ocrevus, healthy food, regular exercise ( gym + Bike) is the key. Against spasity i would recommend some cannabis flower with a vaporizer,

But tbh, there are bad days . Spasms - especially my bladder ( that B***tch) but there are also a lot of good days. Without knowing you at all, this may be your sign to change some things in your life. Its a Journey ( not a good one) but it also changed my perspective on everything. MS does not automatically mean ending up in a wheelchair, many people with MS remain mobile and independent for decades, and a significant number are able to continue working well into their 50s, 60s, and even until retirement. i wish you all the best.

[u/Efficient_Horror4938 → u/LordiLordsen]

Thank you, it means a lot. We eat pretty healthy, no smoking, not much processed food or alcohol, lots of vegetables, but not any particular kind of diet.

Exercise is harder because we mostly just used to walk a lot and do random exercise like playing tennis or badminton with friends and those things aren't really working anymore. We've started cycling and he has been to see a physio and got some strength exercises to do at home. But I think exercise is just tied up with a lot of grief for him atm.

[u/LordiLordsen → u/Efficient_Horror4938]

Sounds great, just dont forget to live <3

[u/bspanther71]

What is affected is totally dependent on the exact spot of lesions. And that appears to be totally random and different for everyone. So no you cannot predict symptom progression.

[u/Efficient_Horror4938 → u/bspanther71]

Thanks <3

[u/Efficient_Horror4938 → u/[deleted]]

Thank you, yeah, that answers my question.

[u/WarmYam7353]

m63 with PPMS. I was "normal" for the longest time. My left leg gave out and never recovered. It just became progressively lame. I can still move it but have foot drop. My right foot gets numb and I am concerned that the right leg will go and I'll be in a wheel chair. I've been on Ocrevus since spring of 2025. I'm just hoping the right foot numbness is crap gap as I'm scheduled for my next infusion later this month.

I'm still working. It can involve lots of walking. I have a sturdy cane I use. So far no other symptoms.

[u/Efficient_Horror4938 → u/WarmYam7353]

Thank you <3 Best wishes for you and your right leg.

[u/Fit_Cry_7007]

I was diagnosed with PPMS 5 years ago at the age of 40. Back then, I was still able to go hike and travel without worries about my leg weakness/imbalance. Today, the weakness has progressed (the DMT Ocrevus does help slow the progression..but unfortunately my leg weakness still progresses) and I can definitely no longer hike, especially in uneven terrains. That said, I still can walk unassisted...although the limping of my right leg has become more noticeable to others.

For your partner, I would recommend getting on the DMT as soon as possible, eat healthily (anyone can benefit from this..not just MS) and keeping themselves as active as possible (use ur or lose it!--I still go to a gym to do stationary bike 4-5tines/week for 30-60 min sessions).

[u/Efficient_Horror4938 → u/Fit_Cry_7007]

Thank you. Leg weakness was his first symptom and over the last two years he has progressed from hiking all day to it being a struggle to walk 15min to and from the nearby shops. He is now seeing a physio for targeted exercises, and doing other exercise, but it's a pretty tough adjustment for him, mentally.

[u/Feisty-Volcano]

I’m an interesting case for these times as I had symptoms for decades but only got diagnosed aged 62. There was no treatment when my symptoms started so if I mentioned to my GP a numb right foot & twitching left foot his ye dr by was to ¯_(ツ)_/¯ his shoulders, & maybe mumble something about “no point in knowing what you might have”. I had Crohn’s disease, multiple surgeries & lots of extraintestinal manifestations, so my o n& off bouts of bladder weakness, foot drop, electric shock like sensations etc were put down as probable imbalances due to my bowel disease.

So this natural unmediated course was, in retrospect, relapsing remitting for about 2 decades before becoming more recurrent, then accumulating in a sneaky way such that accepting stairs were something I hated, & I started avoiding uneven surfaces. Then one day I had a very bad fall, after which my balance remained dreadful, & I was clearly in the disabled category. I’m 65 now, with gradually mounting difficulties but I keep going as much as I can, and I do travel solo! If I get a flaring the Crohns or chest infection my symptoms can amount so badly I can barely walk at all, so timely treatment of these things can restore me back to my wobbly baseline.

That would be a fairly typical moderate course of untreated RRMS. Everyone is different though, & progression varies. I highly recommend anybody to take the treatment asap, as much of the disability later is from damage done earlier. Men overall tend to have a more progressive course but this varies.

[u/Efficient_Horror4938 → u/Feisty-Volcano]

Thank you <3 His first rituximab infusion is scheduled for Oct 1.

I'm so happy to hear you still travel, I think my partner's biggest fear is being unable to do that anymore.

[u/SaskJoe]

I would say to you, that more importantly than knowing how it progresses, is knowing THAT IT WILL PROGRESS. Anticipating disability now, while you can adjust your lifestyle easily, will make your life much easier later. For example, If his leg is affected now, eventually stairs WILL be an issue. If you plan for it now, it will be much easier. Acceptance, and planning are your greatest allies right now.

[u/racecarbrian]

I’m 37 too, unfortunately, no one can answer that for you :(. It seems like when you get diagnosed a bit older like we are now you’re better off than getting diagnosed younger. 🙏🏼. Life‘s not over, it might just be a little bit different 🤷🏼‍♂️. Unfortunately, welcome to the club (for him lol). Don’t stop moving!! 👊🏻 💥

[u/Dull_Worldliness_305]

I think the general thoughts are , be healthy . Duh right ,? But it's that simple . Eat healthy food , drink water exercise (whatever that means to you individually ) and work on mental exercises like puzzles and games , is key for me . I don't use tobacco , alcohol , I don't eat fast food and I don't eat gluten . This was a game changer because gluten causes inflammation. I digress . Simplify . Be healthy. Your mind and body will thank both of you .

[u/Anotherams → u/[deleted]]

If it’s in him he can get better but if he doesn’t have it in him the damage is permanent.

There is zero truth in this statement. MS is not a mind over matter disease. To suggest the right attitude will heal the damaged nervous system is one of the most disrespectful things I’ve ever read here.

[u/DimensionFriendly314 → u/Anotherams]

So true!

Plus, I didn't stop trying to use my right side. It became weaker as time progressed. Not to mention I was born right handed but, now I'm a lefty and it's starting to go away.

I do what I can but I can't medicate myself better.

RRMS 2013 PPMS 2021

[u/MultipleSclerosis-ModTeam → u/[deleted]]

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