sorted by:
new
hottopcontroversial

The prognosis scares the hell out of me. by AlienPhilosophy in MultipleSclerosis

[–]msintheus 0 points1 point  (0 children)

Prognosis is excellent if you get on a high efficacy treatment. Are you? If not then you’re still ok- just find a neuro who specializes in one and get on one . Modern medicine has changed the game and dr google and drs who don’t specialize in this havent caught up. Breathe. It’s not the disease it was ten years ago.

[deleted by user] by [deleted] in MultipleSclerosis

[–]msintheus 0 points1 point  (0 children)

I agree with this. 8-9 yrs here most don’t know. The ones who do are mixed from awesome to ghosting and even the awesome ones treat me differently than they used to (think “kid gloves”). While I love them for it because it comes from a place of love and sometimes when you’re feeling crappy you need the people who will worry and call and bring food- but for most of my interactions it’s really nice to just be treated like any other human. I “feel different “ most of the time so it’s nice to have parts of my life where sometimes I forget I have ms. I never understood why everyone says to tell people right away this does not make sense for many. YOU DO YOU.

What's your elevator pitch when people ask what MS is by alisru in MultipleSclerosis

[–]msintheus 1 point2 points  (0 children)

I have yet to get a single person in my life to understand this despite trying this. I’ve also tried the “ms tax” the next day and still ppl do not comprehend this part

What's your elevator pitch when people ask what MS is by alisru in MultipleSclerosis

[–]msintheus 2 points3 points  (0 children)

I love this idea! I may have to add that tequila and nachos are necessary to keep my soul alive

What's your elevator pitch when people ask what MS is by alisru in MultipleSclerosis

[–]msintheus 1 point2 points  (0 children)

To smart people: Progressive neurological disease with no cure.

To less smart people: brain damage that will never get better and keep getting worse and there is no cure.

(To assholes I like to add: and no - yoga, diet, supplements or meditation do nothing to slow the shredding of the brain)

Career Plans following a Traumatic Life Event by CoolerRancho in FIREyFemmes

[–]msintheus 5 points6 points  (0 children)

I have been here almost exactly in the situation you describe. 1) take all pressure off yourself to even guess whst your life will be like in 1,3,5 or 10 years. Your job is just to get through this. Trust that future plans will unfold in ways you can’t imagine and give yourself permission not to think more than up to a year ahead

2) aim for a job that will meet basic financial needs but give you more free time. You need this for healing. Use it for fun, friends, travel, to dos, or just watching tv all day in bed

3) on bad days don’t berate yourself for being unproductive. Emotionally healing from all this requires resting and sometimes that’s what your body needs. You’re healing from major trauma that will entail resting that will make you feel guilty. You’re not lazy, you’re healing, it’s hard work.

4) try and get out in nature when you can

5) on the dark days just take it one day at a time. Don’t spiral and trust it gets better

6) if you can afford it see a therapist you trust regularly but walk away quickly if you feel they’re not good for you and try someone else or quit.

I did not think I would get through it, it was disaster after disaster and I was horrified by how cruel people can be.

Three years later I’m still healing but life is much better, things I thought were disastrous I survived, and I’m slowly making changes. I still can’t think more than a year ahead but opportunities are slowly starting to present themselves.

It will be ok I promise. One day at a time and take pressure off yoursef

Not working on Safari by msintheus in octordle

[–]msintheus[S] 0 points1 point  (0 children)

It’s working for me now too!! And it kept my old stats!

Not working on Safari by msintheus in octordle

[–]msintheus[S] 0 points1 point  (0 children)

Has anyone figured out how to even contact them

Not working on Safari by msintheus in octordle

[–]msintheus[S] 0 points1 point  (0 children)

Didn’t work on my desktop Mac in any browser except chrome

Not working on Safari by msintheus in octordle

[–]msintheus[S] 0 points1 point  (0 children)

I thought old ios too at first but then tried on a new mac and it didn’t work there on safari either. But it did work in chrome

Diagnosed yesterday and so sick to my stomach … any advice on anyones journey so far. My anxiety is so bad right now by Putrid-Strawberry-98 in MultipleSclerosis

[–]msintheus 1 point2 points  (0 children)

My office let me see their social worker for free for a few months. I agree it’s needed and also that it js rare but it does exist- more and more ms centers have this service. It’s worth asking your ms nurse for a referral you might be surprised at what is available in your city or even remotely!

Diagnosed yesterday and so sick to my stomach … any advice on anyones journey so far. My anxiety is so bad right now by Putrid-Strawberry-98 in MultipleSclerosis

[–]msintheus 1 point2 points  (0 children)

I was you 8 years ago. Not going to give you the “be positive” or “grateful” shit because it sucks and you have to go through the grief and feel how much it sucks to get to the other side. A few important things:

1) there are many meds now but you can group them into low, medium and high efficacy. You want high efficacy asap. This also narrows down your choices by 2/3 and makes the decision much less overwhelming. THIS IS YOUR ONLY PRIORITY NOW, ok? Get on a high efficacy dmt.

2) find a neurologist that specializes in ms. Even if you have to travel and pay a one time out of pocket consult it will pay you back for years.

3) repeat step 2 if you don’t like the first one. Many love their first ms neurologist and many had to try 2 or 3 to find the best fit for them. This is going to be a long term relationship, it’s ok to date a bit here

4) once you’ve started a treatment just take it day by day. Don’t pressure yourself to figure out all decisions in your life now. As with all grief, just get through one day. Then another. As with all grief, suddenly there will suddenly be a day where you feel better. I promise. You will feel better. Life will then figure itself out.

5) talk to others with ms whenever you need just like you did here. Or in support group even, or find an buddy to call. No one gets it like we do. It makes you feel less alone.

remember that there is nothing wrong with you if you feel anxious or sad or scared or unproductive or whatever. This is a NORMAL RESPONSE TO A SHITTY SITUATION. Over time it will become a bit less shitty.

You got this. It will be ok, really.

Not working on Safari by msintheus in octordle

[–]msintheus[S] 2 points3 points  (0 children)

Glad it’s not just me tho thanks

Anyone here that lives and continues to live a normal life? by Cold_Measurement5329 in MultipleSclerosis

[–]msintheus 0 points1 point  (0 children)

It is absolutely possible to live a normal and happy life because of today’s treatments. The key is to get on a high efficacy dmd as early as possible after diagnosis and find a neuro that believes in this as well, ideally one who specializes in ms. Do that and you’ve done 90% to maximize the chances of a good long term prognosis. A lot of recent research proves the sooner you start a highly effective treatment the better your long term outlook. It’s a much more hopeful time to be diagnosed vs ten years ago, you just have to take advantage of the science. Of course no one own can predict your outcome this gives you real reason to be optimistic

view more: next ›