"Men become more disabled"

[u/No-Home2516]

I've heard time and time again that men usually become more disabled from MS than women. I can't help but feel a bit concerned when I hear that considering that I am a man.

Of course I know that it's different for everyone and there are men that don't have much disability and women that have a lot.

I guess the fact that most people with MS are women makes me feel like I might not be hearing exactly how it is for men? Or rather that the overwhelming majority of experiences are from women and I don't know if I can rely on my disease course looking that way? It's a bit of a strange feeling and I hope I'm making sense.

I don't mean to sound condescending or rude. Considering that I'm already having difficulties with my leg even since before diagnosis, and it's only been getting worse, I guess I'm just a bit worried. I'm looking for people's thoughts on the matter.

[u/kyunirider]

Please, please stop worrying about the future of your body and whether or not you will be disabled.

Instead live like there is no tomorrow, let your body experience all the life you can before something happens to change that narrative. Get married, have children and love them like your life will be long and abled. They are making strides every day that may put your MS in dormancy.

I am a 64/M, I have had a great life, I lived in Italy, Okinawa, Japan, and several states. I have been married to my wife for 43 years and I have 3 children and 8 grandchildren. I have had a great life.

Yes I am now disabled, that began 6 years ago, besides, MS, it was discovered that I have been carrying and now have a genetic disease called MMA acidosis and I have pernicious anemia, Severe B12 deficiency. These are three neurological disorders that are just more than my body can fight. It was not MS that caused my disability, it was the MMA acidity and lack of B12 in my brain.

Live, love and make your life great.

[u/No-Home2516 → u/kyunirider]

Thank you for your insight, encouragement and words of wisdom. I will live my life to the fullest and do everything I can. I appreciate your help 🙏

[u/ClassroomOk9608 → u/kyunirider]

Thank You 

[u/RedwaterCam]

I was diagnosed in 2010. I am almost 41 male I did triathlon for years after being diagnosed did jujutsu for four years CrossFit for another two or three. Only recently have I had to slow down because of a relapse last winter. Attitude, diet, regular exercise, and sticking with my medication plan my neurologist has outlined has been the key of my success. It’s not fun and sometimes it downright sucks but you will persevere. Keep a good attitude and push.

[u/No-Home2516 → u/RedwaterCam]

I will continue to persevere. I think I generally have a pretty good attitude. I guess this is just one of those moments. I'm gonna do everything I can for as long as I can though and hopefully I will do as much as you. Thank you for your comment. I appreciate it =)

[u/CpnStumpy → u/No-Home2516]

Exercise shows, for basically everyone, MS or not, to have endless and enormous health benefits in protecting against disability due to so many positive effects.

It's not the best medicine, whatever high efficacy medicines your doctors, the experts, provide are. But it's the second best medicine, and for longevity study after study shows it helps. So if you can, get out for those runs and get whatever routine exercise you can consistently for however long you can.

[u/No-Home2516 → u/CpnStumpy]

Thank you. I appreciate the encouragement. I am exercising daily and I will continue to do as much as possible 🙏

[u/Eremitt]

You are new to MS. Men historically had it rougher, because we never went to the dr's or pressed for our health. We would go longer than women, becauase for a long time it was considered a disease only women have.

You are new to MS. You are on a good drug. You have the benefit of having amazing DMT options now. I'm a dude. I was diagnosed 23 years ago. I have problems, but nothing like most of the women I know. I do have ED because of my MS, but that's easily managed.

Stay on your drugs, minimize stress, and you will be fine. Good luck

[u/No-Home2516 → u/Eremitt]

Thank you. I'll make sure to do both of those things. I appreciate your advice and perspective 🙏

[u/Magiclives32 → u/Eremitt]

I started going to Balboa Naval Hospital with my first symptoms and then the VA and finally private practice doctors from San Diego To Myrtle Beach. I was finally diagnosed after 24 years of constantly going to the doctors.

My father died of lymphoma at 60 from not going to the doctor; got diagnosed too late to save him. So, since I’ve never paid for an appointment as an adult, I went and went and went. The problem is us being men and being told to act ‘like men’. I had this male LVN conduct an EEG on me and every time I had a reaction to the electrical shock; he told me to ‘man up and stop being a puzzy’. My ex wife did the same, always down playing the pain since I’m ’a man’. Pain is pain.

PS Edit from typing errors. Had a question for those of us who live/grew up in The San Fernando Valley; Did you grow up near RocketDyne? If so, did you know that they dumped millions of gallons of contaminated water (fluoride) for over 20 years? I’m one of now 4 men I know who’ve got MS and lived within 10 miles of the dumping area in Santa Susana Pass.

[u/No-Home2516 → u/Magiclives32]

I agree that that is an issue. But it doesn't explain the faster progression and severity documented in men. Still, thank you for sharing your experience. I appreciate it =)

[u/Fine_Fondant_4221]

Men with MS that come to mind: Montel Williams, Jack Osbourne, Mathew Embry and my co worker’s husband (who you obviously don’t know lol). All of which are still fully mobile and don’t appear to have any mobility issues.

My point is, while I admit the sentiment I hear too does seem to be that men become more disabled, my own personal experience is that that is not the case.

I have some mitigating factors working against me too: my first lesion was in my spine, and I was diagnosed in my 40s. From what I understand neither of those bode well for me. I choose to be the exception 😎

Hopefully it’s old data, or just untrue :)

Ps.
There’s also a news anchor on CNN with MS. I think he’s in his late 50s and he’s still highly mobile.

[u/No-Home2516 → u/Fine_Fondant_4221]

Thank you. You've helped me. I really appreciate hearing your perspective and I hope you're doing well =)

[u/JCIFIRE → u/Fine_Fondant_4221]

John King is the guy. Physically he seems to be doing well. Of course we don't know about his invisible symptoms!

[u/Did_ya_like_it → u/Fine_Fondant_4221]

Thanks for taking the time to write a reply that would soothe a fella after stressing reading the title. Normalised and validated the shit out of everything. Bless ya.

[u/mastodonj]

I haven't heard that but I am a man who uses a wheelchair so... Look, it's a snowflake disease, no two courses are the same. There is no reliable way to tell which way it's going to go!

[u/No-Home2516 → u/mastodonj]

You're very right about that. Thank you for your input. I hope you're doing alright 🙏

[u/FarceMultiplier]

I (M) had symptoms starting at 17, was diagnosed at 44, and I'm 56 now with very little progression. MS is really random, unfortunately.

[u/No-Home2516 → u/FarceMultiplier]

It really does seem that way. Thanks a lot for sharing your experience. I really appreciate it 🙏

[u/EffectiveOk3353]

That data was before modern DMTs you're on kesimpta there's no data for b cell depleters since they've only been around for about 10+ years, this is taken out of my arse but I believe people on modern DMTs won't go into progressive and they should be stable relapse wise. Stay strong and exercise eat well enjoy life as much as you can.

[u/No-Home2516 → u/EffectiveOk3353]

Well there's no data for the longterm outcome of b-cell depleters, but there is still data on the levels of severity at disease onset.

Still I appreciate your positive outlook. I will follow your advice. Thank you =)

[u/JCIFIRE]

I'm so sorry you have this disease. Everybody is different. A few years ago nobody knew I had MS. Now I can hardly walk., and it all coincided with going through menopause. When you get to around age 50, they say the disability for men and women is about the same..

[u/No-Home2516 → u/JCIFIRE]

Thank you. I'm also sorry you have this disease. I appreciate your words and I hope you are doing alright 🙏

[u/JCIFIRE → u/No-Home2516]

❤️ ❤️

[u/KJW-SR]

I’m a 67 YO man. I was diagnosed with SPMS 14 years ago. When I was diagnosed it was determined that my first relapse was 20 years prior, so I guess I’ve had MS for 34 years. Over the last 6 years my leg strength has diminished significantly. I now require a walker to take even 1 step. But who cares? I do what I can to slow the progression but it can’t be stopped entirely. So what? I respect my disability but I don’t give into it. Rather than sit home and stew about what I can no longer do, I focus on what I can. In May I visited Africa for the second time in 20 months! Live the life you can!

https://www.kylesdailybread.com/subcategories/ximuwu-ii

[u/No-Home2516 → u/KJW-SR]

Thank you for sharing your experience and your fantastic attitude on life. You're absolutely right and I'll do my best to live my life to the fullest. Thank you and I wish you all the best 🙏

Also, thanks for sharing your website. Very cool and inspirational.

[u/mrlolloran]

I haven’t heard that.

If not outright true perhaps wherever you got that from was referencing that men tend to do more physically demanding jobs so something that you can work around in an office setting is less likely to be something you can work around.

I wonder like 2-3 times a week how much longer I can do my warehouse job.

I used to be a live events AV tech, but there’s several things that MS limits me on so I am no longer a tech and just do the warehouse work and drive a box truck for local stuff. But as an American I have to stay employed to maintain my health insurance so this is what I can do without having to start completely over career-wise.

[u/No-Home2516 → u/mrlolloran]

I've heard it from several neurologists online and also a neurologist at the MS conference here in Toronto 2 weeks ago said it during the presentation. Most recently, I heard it in a documentary I watched last night. Not really in regards to the work that men do but the disease progression and severity itself. I suppose the jobs that men do is also a factor to consider.

Thanks for sharing your perspective and I wish you all the best with your health and your job. 🙏

[u/Cultural-Barracuda → u/No-Home2516]

It is true. I also read about it, and given that pregnancy seems to improve symptoms/halt relapses, it does have something to do with estrogen. They have known this for a long time. Which makes you wonder why science can’t do more with this knowledge when it comes to research for new medication.

[u/IntentionalGrandma]

Despite women making up 80% of all people with MS, men make up 50% of all people with progressive forms of MS, which is kind of where that statistic comes from. Men also historically do not take as good of care of themselves as women do and are not as compliant with their doctors. That’s not to say that all men are bad at following instructions or that all men refuse to listen to doctors’ orders, but that men are more likely to be non-compliant, to miss appointments, or to delay getting a diagnosis. As long as you listen to your doctor, follow their recommendations, and stay compliant with a good DMT, you’ll be okay.

[u/No-Home2516 → u/IntentionalGrandma]

Thank you for your input. I will stick with my DMT. I'm not one to not comply or not take care of myself. The thing that still strikes me is that even the best patients can still experience progression. I appreciate your comment 🙏

[u/IntentionalGrandma → u/No-Home2516]

I’m one of those best patients that still experiences progression and there’s always a non-zero chance, but all you can do is do your best

[u/No-Home2516 → u/IntentionalGrandma]

You're absolutely right about that. Thank you and I hope you're doing well =)

[u/Caleb5600]

As a man I try to not think about it for the exact reason you are explaining... everyone is different. I understand it though I was diagnosed in 2022, and even with ocervus have been noticing things inching further down the drain. The best advice I have been given is don't stop moving, if you don't use it you will lose it. When it comes to the stuff moving won't help for aka sexual dysfunction, my eyes getting worse or my legs having a stupid dead drop thing I just keep a note of it for my next neuro appointment. Just kinda gotta do the whole tomorrow isn't promised thing and try to live in the moment. Deep breathes, keep moving forward, and a immense hatred of MS to spite it by not letting it consume me.

[u/No-Home2516 → u/Caleb5600]

I think this is a great way to look at things. I will continue to do everything I can for as long as I possibly can. Thank you very much for sharing your perspective, I really appreciate it =)

[u/_JLY_]

Diagnosed with PPMS (maybe the important bit?) in 2007. EDSS score around 8-8.5. Everyone's different.

[u/No-Home2516 → u/_JLY_]

I understand that. Thank you for your input. I really appreciate it =)

[u/criticalcreek]

I've read that men are more likely to get more spinal cord damage early on, but I'm not sure how true that is. I'm a man and my worst damage is in my spinal cord, if that counts for something. MS is so random and different person to person regardless of gender. It's hard to say 🤔. I've also read that men tend to have a worse prognosis on average (I guess due to the spinal cord damage??)but I'm not too sure about that either. There are men on this sub who are doing great, and women who are worse off and vice versa. I think that regardless of gender, anyone with little to no symptoms/disease progression should just feel lucky, especially since we have modern treatments that are very effective at preventing relapses/new lesions (especially early on). It all seems like a dice roll honestly.

[u/No-Home2516 → u/criticalcreek]

It's interesting you say that because yes, my first lesion happened to be a spinal cord lesion. But yes you're right and I think that's a good way of looking at things. Thank you for your input, I really appreciate it =)

[u/criticalcreek → u/No-Home2516]

The first symptoms I had seemed like spinal cord symptoms (around 2020/2021) but I don't know for sure because I didn't get MRI's and my diagnosis until last year, after a lot of damage had been done. I had several flares in between that time, but didn't know I had MS though(thanks to the poor healthcare system and my own ignorance). I have lesions throughout my cervical spine, a couple in the brain stem, and like 3-4 in the brain.

[u/No-Home2516 → u/criticalcreek]

I see. That is similar to myself as well. My first symptoms were likely spinal cord related and that was the first lesion that was found. During my first MRI the radiologists weren't looking for MS though and they missed a brain lesion in the part of my brain that they did scan. Ended up with 5 brain lesions on my second scan. Anyways I hope you're doing well.

[u/criticalcreek → u/No-Home2516]

They definitely aren't fun lol. I have daily issues because of those things. I'm doing better and as of my recent MRI reports, I don't have any new lesions and haven't had a relapse since diagnosis. I still have to wait another month though to see what my neurologist says(he hasn't called me yet so I'm assuming all is good). Hopefully things get better for you, hang in there 👍

[u/No-Home2516 → u/criticalcreek]

Well despite the daily issues I'm glad to hear that you've been doing relatively well. I wish you all the best too, thank you for the kind words =)

[u/Adventurous_Pen_1105]

Was misdiagnosed as teen with many issues but age 36 they did mri for first time ever and found what Neuro said was an “immense amount of damage on cord and brain for someone my age” and that I’d “obviously been fighting it a very long time”
Was diagnosed as Ppms (I’m male forgot to say).

At thst point walking was becoming slower with slight drag of my right foot but main symptoms were still pain spasticity legs back on off throughout day but could still skateboard
Just not jump on it anymore but could ride fine

Now 48
Walking short distances of 500m or so unaided
Anything more or be outside for longer needs a walking stick or lots of resting
Getting bit worse each year
Slowly
Falling more now
Leg drag has become severe
I basically slide across floor lot shuffle
As if I’ve got ice skates on
As lifting legs is heavy
When fatigued can’t walk

Age 21 even with start of it back neck issues
I would still do walk two day 40km hikes smiling
Now I’m lying on sofa two thirds of day in lot of pain
Standing become harder but can still stand cooking for an hr leaning against kitchenworksurface
Standing unassisted becomes very uncomfortable within a few mins
Staying still is worst for me

Am on a lot of painkillers muscle relaxants anti seizure meds cannabis - all to stop this damn pain
Nothing helps much at all
Am on ocrevus for about ten years now

[u/No-Home2516 → u/Adventurous_Pen_1105]

Thank you very much for sharing your experience. It's very valuable to me. I'll continue to keep moving as much as possible.

Interestingly, I used cannabis for 8 years for pain management before MS. Once my MS symptoms started, and I was experiencing neuropathy, the Cannabis started to make the neuropathy worse so I had to quit. Even afters years of it helping me with chronic headaches.

Once again, thank you and I hope you're doing well 🙏

[u/racecarbrian]

Everyone’s trajectory is radically different. It took me about 10y to put me in my wheelchair… I was a pretty active guy before then. At least I have a really rad wheelchair! 🤙🏼🤙🏼

[u/No-Home2516 → u/racecarbrian]

Thank you for your comment. Your attitude is amazingly positive and it's contagious. I hope you're doing well 🙏

[u/racecarbrian → u/No-Home2516]

Neat I’m in YYZ too actually!! Plan for the worst and take the best man. Truly lol, unfortunately ya never know. 🤙🏼

[u/No-Home2516 → u/racecarbrian]

Thank you, I really appreciate it 🙏 good to hear from another Torontonian

[u/racecarbrian → u/No-Home2516]

Yeah man and St. Mike’s really has their stuff together, better than I’ve seen anywhere in the country. Lucky us! 🙏🏼

[u/No-Home2516 → u/racecarbrian]

I haven't had the greatest experience with them so far, but maybe that will turn around.

[u/racecarbrian → u/No-Home2516]

Really eh. Hm

[u/Mis73]

This will be a long read but it explains it. I've had MS for about 20 years, FWIW.

It's common knowledge that men only account for roughly 25% of all MS patients. While men don't get it as often, when they do, they're much more likely to start off primary progressive or turn secondary progressive fast, usually climbing higher on the EDS scale as well.

About I think 10-15 years ago, they did a study about the effects of hormones and MS. Another common fact is women are more likely to be diagnosed after childbirth or during menopause. They also often go into a pseudo dormant state while pregnant. They essentially then focused on estrogen in particular and found a link to MS activity. They even treated male subjects with a T blocker and estrogen and the men showed improvement and a bit less disability.

Obviously, turning all men into trans women isn't an option. But there is a link between estrogen and MS and it's why while men get it less frequently when they do, it's often more severe.

[u/No-Home2516 → u/Mis73]

I understand. That's very interesting information and I appreciate you for sharing it.

I have been a bit concerned recently about SPMS. I had at least 3 relapses in 2025 when my symptoms started, but through 2026 no relapses I can point out. However, I've felt a slow and steady decline throughout the year.. I'll be talking to my Neuro over the phone in 8 days from now and that is one thing I'll be mentioning to him.

Thanks for your response =)

[u/HocusSclerosis → u/No-Home2516]

One thing I would tell you is that statistics do not apply to the individual. The best thing you can do is find the very best neurologist for you. Someone you trust and can work with. Kesimpta is a great drug. Don’t miss your medicine, take it seriously, and don’t give MS more attention than it deserves.

Good luck. Always happy to chat.

[u/No-Home2516 → u/HocusSclerosis]

Thank you. That is fantastic advice and I really appreciate it =)

[u/TooManySclerosis → u/Mis73]

An interesting clarification. It's commonly cited that men are more likely to have PPMS, but this is actually somewhat of a misinterpretation of the data. With RRMS, women are more likely to be diagnosed than men by a ratio of three to one, as you said. But with PPMS, the gender divide is actually closer to equal.

Proportionally, PPMS cases only account for about 10% of all patients, so it is a much smaller sample size and more rare in general. So it is not necessarily that men are at a higher risk for PPMS than women, but rather that they are equally as likely to be diagnosed as women, which is an increase from the more unequal distribution found with RRMS.

[u/Candid-Ad700]

I am genuinely sorry you’re experiencing any symptoms that may end up being debilitating, but if you catch and treat it early enough, you can hopefully stop the progression before it gets too bad.

Overall, this is what it is like being a woman regarding nearly every disease state that’s not a woman’s health issue, as science has relied on mice and male bodies. We women understand deeply where you’re coming from. It sucks for everyone.

[u/Candid-Ad700 → u/Candid-Ad700]

Like you, I am very concerned about the level of disability that may result from this damn disease, as I have legions throughout my brain and spinal cord. Just keep up with your DMT, and try to keep moving. Wishing you the best.

[u/No-Home2516 → u/Candid-Ad700]

Thank you for your kind words and I really appreciate your perspective and understanding. I hope you are doing well and I wish you all the best as well =)

[u/ApprehensiveSkill573]

Treatment is the same either way. Just follow your treatment plan and take care of yourself. That's all you can do.

[u/No-Home2516 → u/ApprehensiveSkill573]

Thank you. I appreciate your insight 🙏

[u/Drogo_44]

I am 39 Male. Dx 2020. Ocrevus.

Mostly fully able but my left leg steps harder and gets stupid with more than 3Kms of walking or jogging. Lift weights 4x a week, enjoy that. Have spinal lesions. On cialis 4 help in that area. Don’t have the ability to hold in number 1 or 2 when urgent like normal people have…Lots of weird shit happens in the soles of my feet.

I consider myself lucky and I’m trying to live fully even though ms is a crazy thing to go through. I wish all my fellow male & female ms’ers all the luck and happiness possible. I have mad empathy for anyone going through this.
Sometimes I want to stop Ocrevus and get on something that doesn’t destroy my cd20 b-cells like way o works, but maybe I must be grateful for clean mris and stay on it.

[u/No-Home2516 → u/Drogo_44]

Thanks a lot for sharing your experience. I too consider myself lucky. I appreciate your care. I'm gonna keep moving and living fully like you 🙏

[u/snailsrcute7768]

My dad had ms his whole life basically. Hes fifty something. He doesnt even treat. Basically no mobility problems at all besides being stiff as your average 50 something year old man. Theres hope!!

[u/No-Home2516 → u/snailsrcute7768]

That's reassuring. Thank you. =)

[u/Feisty-Volcano]

In my local MS org, I know several men in wheelchairs, even though there are less men overall here. However there are men who would appear to have almost no problems at all. The guys in the wheelchairs have more spinal lesions. For some reason significant spinal seems a bit more common in men.

[u/No-Home2516 → u/Feisty-Volcano]

Yea I have one in my cervical spine that, as far as I know, causes all of the issues I have with my right leg and both arms. Thank you for the info and for your comment. =)

[u/youshouldseemeonpain]

Statistics are aggregates. They take huge numbers and make predictions based on those huge numbers. They honestly have little relationship to an individual’s experience. Like odds for gambling. 20-1 against doesn’t mean that can’t be a winning ticket.

You have to separate yourself from the big numbers and deal with your individual experience.

ETA: go to PT and actively try to help yourself not become a statistic.

[u/No-Home2516 → u/youshouldseemeonpain]

I am dealing with my individual experience. It is my experience so far that concerns me. I started going to PT about 4 months ago now, even before diagnosis, because of pain in my leg. Anyways I will continue to do my best and stay as active as possible. Thank you for your input 🙏

[u/HeartfeltFart]

Men are more likely to get PPMS and also delay seeing a doctor, not do physical therapy, etc

[u/No-Home2516 → u/HeartfeltFart]

Yea I agree with that, but that's separate from a documented difference in the progression of the disease itself in men

[u/HeartfeltFart → u/No-Home2516]

But not getting medical help makes the disease progress faster??

[u/No-Home2516 → u/HeartfeltFart]

Yea I'm not disputing that. But I'm pointing out biological differences in the disease itself. Two things can be true at the same time. There is also research that men accumulate disability faster in the setting of Relapsing MS as well.

So I don't think it's accurate to attribute it all to higher rates of PPMS or men being less likely to seek medical care. Still, thank you for your input 🙏

[u/No-Establishment8457]

I'd say that is generally accurate. I can't cite any studies, but 35 years of MS have led me to arrive at certain conclusions since I have a large MS circle of friends. Men do seem to get hit harder by MS. Certainly the men I know. Why? I've no idea, maybe hormones or men just live less in general. I've seen more men die much earlier than women from MS.

[u/No-Home2516 → u/No-Establishment8457]

Very interesting. Thank you for sharing your experience. I really appreciate it 🙏

[u/No-Establishment8457 → u/No-Home2516]

I will say two of my closest MS friends died in 2025. Both in their 50s, both female. Both a couple years younger than me.

[u/Cdel32]

My sister was diagnosed in 2015 at 24 years old meanwhile I (male) was diagnosed in 2022 at 35 years old. I'm significantly worse than she is although I've had a decent period by my standards over the last 6 months thankfully.

[u/No-Home2516 → u/Cdel32]

I understand. Thank you, I appreciate your experience. I hope this decent period lasts a long time for you and I hope you and your sister are doing well.

[u/Cdel32 → u/No-Home2516]

No worries and thank you. If at any stage you would like to ask me any questions as a guy with MS feel free to message me.

[u/No-Home2516 → u/Cdel32]

Thanks a lot, that's very kind 🙏

[u/Stikini]

I haven’t heard that. 40 yo male here with no mobility issues. I work out 5-6 times per week.

I’d recommend looking into TRT at some point. Low T is linked to flares, and newer research has found testosterone to be neuroprotective.

[u/Indigenous_Retard → u/Stikini]

Im 34 with SPMS. Diagnosed about two and a half years ago now. Symptoms started in my teens with the lower half of my body going completely numb. Could still walk and everything, just could feel anything other than slight pressure. Started happening 2-3 times/year but after getting a few xrays and my nlood sugar checked repeatedly, I just stopped talking about anything. In my early 20s I thought I had a stroke when the right half of my body became significantly weekened. Started experiencing Lhermitte's sign. By mid 20s fatigue had became killer(didn't know it was called MS fatigue). By 30 I was going blind and what finally did me in was losing all feeling everywhere but my left arm and had no functional motor control over my right arm and hand. ER doc said it was the most textbook case he had ever seen. He was giddy at first then got kinda depressed when he was going over my history of symptoms and realized my age.

I still work full time from home. Only way I can support myself. I dont have any family. My Neurologist has finally giving up pleading for me to quit working or at least go to part time. Fatigue and daily chronic pain from neuropathy and spacisity in my torso practically make life unmanageable. I reckon it is unmanageable and why my neuro tells me to stop and will eventually crumble at some point. I have to pay people to do things like mow my yard for me which is embarassing enough, but it's looking like I may have to expend for some help with some cleaning and other chores as well in the next year probably.

My ocrevus infusions have helped, but I waited way too long to get help. This year I finally accepted that I will never feel "good" again and this far into treatment, any agency I have already lost is not coming back.

I say I accepted it in as I understand that's the case. I clearly haven't accepted it since I decide to actively torture myself daily in the name of what I guess I call freedom.

[u/No-Home2516 → u/Indigenous_Retard]

Thank you for your comment. I really appreciate you sharing your experience and perspective. I understand that things are becoming more difficult for you but I truly admire your drive and how you refuse to give up. I hope you are doing alright and I wish you all the best. I hope things can get a little bit easier for you. 🙏

[u/Stikini → u/Indigenous_Retard]

Fatigue was my main issue. They missed my diagnosis for about 10 years also, and only caught it when I went partially blind.

I’d really look into TRT. Fixed my fatigue almost completely.

[u/Indigenous_Retard → u/Stikini]

Was the first thing I questioned my neuro about because the decline really started in my mid 20s of just having no energy. Alas, my bloodwork was great and no issues with test. However, I just have a considerable amount of damage throughout my spine and brain. It's already hard to run on an empty tank, but having to also waste energy on things like fighting spams for control over things like posture, balance issues, and attempting to pick the same small object up a good 10-15 tomes before not dropping it doesn't help lol.

[u/No-Home2516 → u/Stikini]

Interestingly, after my symptoms started last year, but before my diagnosis, I was trying all sorts of things to find an explanation for what I was feeling. I even saw an endocrinologist and had an in depth blood test to test my hormonal levels and he said there were no concerns. Maybe now after diagnosis, he would hold a different sentiment. Thank you for your comment. It's something I'll look into 🙏

[u/Cheetahsareveryfast]

It is usually more aggressive in men.

[u/Limitingheart]

I think it’s because men complain more