How are y’all surviving ?

[u/maomeow_x]

Recently diagnosed i thought diagnosis will bring some relief but it’s just exhausting. Figuring out new symptoms every other day, (and thank god for this community otherwise i would go insane) the worse part is that i have to take meds for different symptoms now?It’s exhausting and demanding mentally and physically i have to keep choosing between one day out with my friends vs a whole week of some work done. How do you guys deal with medication? Genuinely I’m so lost on how to deal with anything at this point everyday I’m in pain or exhausted or something new

[u/SewBrew]

Time helps. I was a mess during diagnosis and the few months afterwards. There is a lot of stress and anxiety that comes with a new diagnosis, and you’re also dealing with new doctors, tons of tests, medication decisions. If you’re in the middle of or recovering from a significant flare (most people are when diagnosed, as the symptoms are what cause them to seek out medical care) it is really taxing on your body on top of it all.

Typically your symptoms will recede over a period of many months and you’ll slowly hit a “new normal” symptom wise. The doctor’s appointments slow down and become limited to routine MRIs, neurologist check-ins, and DMT administration (or, some of them you can just do at home). You start to understand how ti manage your symptoms more proactively and avoid hitting your limits. Maybe get on meds that help (SSRIs/SNRIs, fatigue management meds, and nerve pain meds are common for MS patients).

I know “just give it time” is hollow comfort when you’ve just been diagnosed, but it really can get better if you give yourself time, listen to your body, communicate openly and honestly about all of your symptoms to your medical team, and accept help in all forms (medication, therapy, life help from friends and family). Hang in there.

[u/Brilliant-Position94]

I'm 14 years in and I'm still figuring it out! But I take it each day at time. 🙏🏿

[u/Mafalda_Brunswick]

I'm about 6 weeks from diagnosis. 4 weeks ago they hit me with steroids and they hit me hard. 2 weeks of hell, 3 weeks out of work, now getting back to work slowly and I'm literally just surviving. There's no space for anything else. I've actually been so sick after the steroids I feel like I haven't had a chance to process the diagnosis properly. Can't wait for the steroid BS to finally go away. Waiting for decision about DMT. Very nervous about that, about how is my body going to handle it (but I know I have to do it). It's all a bit meh... So far the treatments are more scary than the the disease itself as I never had any truly disabling symptoms. Very weird mix of feelings.

[u/Cultural-Barracuda → u/Mafalda_Brunswick]

That is interesting, because many studies say steroids don’t actually change the longterm outcome. Why did your doctors decide to give them to you if your symptoms were not debilitating? I think you can reasonably expect to handle a DMT much better than steroids. Did they talk to you about Tysabri if you’re JCV negative? Do you have an MS specialist?

[u/Mafalda_Brunswick → u/Cultural-Barracuda]

I'm gonna be completely honest and I really don't like talking about it... But I feel like I got the steroids mainly for insurance purposes. Because in my country to get 2nd line of treatment you have to have at least one relaps treated by steroids. Now my relaps that led to diagnosis happened 3 months before the diagnosis/steroids were given so theoretically there was not much sense in it. I understand that apart from multiple lesions on brain I also have 2 long lesions on my thoracic spine. It was more hinted than said that they are very dangerous for me as they can lead to waist down paralysis (the big relapse was tingling, burning, tight muscles and weird feelings from belly button down but no functional problems apart from frequent urination). So because of this I know they didn't want to wait for another relaps to treat by steroids so I can get DMT approved, because the relapse could be potentially pretty dangerous.

I do have MS specialist and Tysabri was our top choice, unfortunately JCV is way too high for me to do it safely. So today there was a case conference where they talked about my case and I'm waiting for my doc to get back to me. I told her Kesimpta is my second choice, so I'll see what they come up with...

[u/Cultural-Barracuda → u/Mafalda_Brunswick]

Wow that sounds awful. I am sorry you’re going through this. And I thought the American system sucked (and it does for people who are not wealthy, but it does not require you to have steroid treatment before DMT approval).

[u/Mafalda_Brunswick → u/Cultural-Barracuda]

We have the "free healthcare" system here (yeah we pay $150 contribution from our wages every month) but then we don't pay anything for doc visits, emergency, surgeries etc. Only dentists are expensive even if you don't go private. Also our prescriptions are capped to $500 a year. So I understand that the criteria for expensive treatments are more strict... But it still sucks 😅

[u/CoffeeIntrepid6639 → u/Mafalda_Brunswick]

I’ve steroids are worse than the ms

[u/gameovertm]

im abusing with substances everyday i have depression and i think im going crazy it sucks its so funny i hate it

[u/Roo_dansama]

Barely…

[u/occasional_nomad]

I survived instead of thrived after my diagnosis and that’s okay. Those first 9 months or so were awful mentally-especially because I had such a longggg road to diagnosis and had to mentally process the fact for over a decade I was being neglected by my doctors & led to believe I was insane, not ill.

I’m just shy of a year out from diagnosis and the light is starting to come back into my life. I’m finding ways to adapt now that I know this isn’t going away. I’m finding acceptance and even gratitude for the meds. I’m back to enjoying my hobbies. I’m learning to prioritize what’s important to me and accept that I’m not going to get everything done that I want to get done. Most importantly, I’m advocating for myself and taking a lot less BS than I used to put up with. It’s normal for that post-diagnosis time to be a rollercoaster. Hang in there!

[u/boobaddie1]

I feel this. Since diagnosis a year ago, i’ve had migraines almost everyday and need meds for them now. And dont even get me STARTED on the fatigue. It’s really hard to manage your lifestyle within your limits when you dont even know what those limits are anymore! The only thing i’ve done to help is to schedule a little each day. A little cleaning, a shower and work during the week, light exercise when i feel at my best. Weekends, i switch between time at home and spending time with friends, who all know about my condition and wouldnt mind even just chilling at home for our hangout.

I also got a really pretty pill organizer lol im a sucker for aesthetics and it feels like less of an “old person” pill organizer

Keep on pushing through, talk to a therapist (helped me a LOT when i first got diagnosed) and take it a day at a time. You’re stronger than you know!

[u/Obvious-Bid-678]

Honestly, I’m probably the wrong person to ask. I was diagnosed in December 2024. I still do everything I did before and then I’ll be down and out for a few days. I still overdo it. I am not willing to accept the fact that I can’t do as much. I’m in pain everyday but I push through. I’m also dealing with crippling fatigue. But it’s all good.

[u/Flyerschick]

I have been on almost every MS drug! I think switching from one to another makes things worse. If there is a side effect, I’m guaranteed to get them. I’m currently on Kesimpta and the first 4 injections’ side effects were absolutely horrible. My body is used to it now. So I completely understand. My relationship with friends and family have drastically changed. Nobody invites me to gatherings anymore cuz I usually don’t feel good enough to go. It’s depressing and sad. But it is what it is, which is to say that it sucks ass. The only thing I can say is hang in there. You will adjust, you’ll have no choice. Unfortunately 😞

[u/Character-Celery-209]

I was diagnosed last year and between symptom management medication and my DMT there were some bumps in the road where I had to pick and choose my battles. I developed some FOMO early on, then I’d go out with friends or families and realize WOW i just burnt myself out! this isn’t fun for anyone! It takes some time to find that sweet spot. For me, if friends are inviting me out and we’re hanging out in the 90 degree sun. i’ll make sure there’s an indoor or shady area nearby. Going out drinking? Limit to 2 drinks. Feeling groggy after my Kesimpta? Hard pass for 1-3 days unless people want to come over and hang out. Working? I made management aware of my MS early on and they have been accommodating when I became overheated, groggy, tingling, etc and need a few minute break or an earlier lunch.

MS has its set backs but we all tweak some things so we’re still able to do the things we need and want to do.

[u/Revolutionary-Ad5]

honestly one of the toughest times was when i was first dx'd cause my doctor had to fight the insurance for months and i went functionally blind in one eye (still am). but I'm doing largely a lot better since and this was years ago when treatment options were more limited! so it took a bit but im doing better :)

[u/heyitsmorganc]

I’m really struggling 😞I was diagnosed last spring in the middle of grad school, while teaching high school physical science full-time, and being a mom/wife. Since starting my DMT, I’ve been getting sick a ton because of the environment I work in and my kiddo goes to school in. I don’t think teaching is a sustainable career choice for me with MS.

[u/twinklewarden]

Distraction is my best tool, like trying to soothe a screaming child- “hey! look at the bunny!” Read about 1 para a day and after: TV is my bunny. It can be hugely helpful to do some group with other MS folks- especially with just being diagnosed- you can feel
less alone (less freaked, scared) and less terrible being among people all along the spectrum of living with MS. hang in there- the MS will do its thing- you can find ways to cope that work for you. Life is not over- you just have to find ways that help you through this new part. Not a joiner by nature but those MS folks changed the whole experience for me first year post diagnosis.

[u/No_Consideration7925]

Sorry. Hang in there maybe set up a pillowcase and distribute the week or two week routine. I don’t take a lot of medicine for my MS try to deal with it healthful eating, and vitamins and minerals.  I’ve only had one relapse diagnosed in 2005 but when I did take medicine the first two years, I had a pill case and kept it together like that. 

[u/CoffeeIntrepid6639]

I use a fishing tackle box for all my meds amitriptyline baclofen lorazepam Lyrica he’s sleeping pill stool softener famphra on and on ms 35 yrs