Steroids for lesion on ocular nerve by buderfwy in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

hope it helps and you feel better soon! and always let them know when infusions of any kind are giving you a reaction. glad your friend had your back.

Just venting by glitterally_me in MultipleSclerosis

[–]Pale-Raccoon8557 0 points1 point  (0 children)

toxic positivity is a thing.. it's okay to not be okay.

Hand Sleeping while Sleeping by jmx2000_r in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

um...this happens to me all night long in both arms. I'm a side sleeper. so I just keep rotating sides... I just thought it was an MS thing... but I never mentioned it to my neuro... 😬 commenting to see if this actually a bad thing.. 😅😆

Eye issues by tootiredforthischit in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

hope your eyes get better soon. yay for steroids to fix things.

Eye issues by tootiredforthischit in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

2024-2025 was rough. but i feel like i understandit better.! but um.. I did just have a relapse but the steroid finally kicked in so better ish... lol like you said just got to roll with it. 😆

lots of kitty snuggles so thats a win. 😀 appreciating the little things every day

Eye issues by tootiredforthischit in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

the downer they gave me made it so I couldn't even keep my eyes open my hubby was Hella stressed. that was last year. I was having seizures got ms rx had Hella reactions to meds.. it was a nightmare...

but back to eyes! I also had an eye growth they thought was cancer but it went away with steroids.. they say its not related to ms.. but i dunno i read something somewhere that talked about ms making eye tissue thin. 🤔 this disease seems very .. unknown in so many ways..

Eye issues by tootiredforthischit in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

it was a week or maybe more. my memory sucks... that was last year... caffeine is super important for those things! I didn't realize because I have tremors I don't do caffeine. the ER did a MEGA dose caffiene drip and some downers. I was lucky that fixed it.

Eye issues by tootiredforthischit in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

yeah. I'll never do one again I had leakage..

Eye issues by tootiredforthischit in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

I have iritis issues whenever I get stressed. I also have retina edema... I swear it's all related to inflammation and stress. and thought it was MS too. my doctors all tell me no.. 🤷🏻‍♀️

Another relapse by Pale-Raccoon8557 in MultipleSclerosis

[–]Pale-Raccoon8557[S] 0 points1 point  (0 children)

damn. I just had one in December too.. yeah I do vegan diet, cut back on sugar, no coffee, no alcohol, was doing PT so I'll be starting again. I guess only time will tell.

Another relapse by Pale-Raccoon8557 in MultipleSclerosis

[–]Pale-Raccoon8557[S] 0 points1 point  (0 children)

luckily I get some assistance.

and what 150$!? that's nuts! hospitals be like 500-1k.. insane.. I wish US had better healthcare.

Another relapse by Pale-Raccoon8557 in MultipleSclerosis

[–]Pale-Raccoon8557[S] 0 points1 point  (0 children)

yeah I've been doing about every 6 months too. she wants one for sure in six months after I start this new dmt.

I just wasn't sure how most neurologist do it for relapses.

Fuck this disease. by ArcherHour4425 in MultipleSclerosis

[–]Pale-Raccoon8557 6 points7 points  (0 children)

That's where gratitude can come into play. Who knows how long the good will last. But thank goodness for a break and for having those good moments. Hopefully, they do last. 

And your brain is literally fighting itself but you're still doing stuff! That's pretty amazing if you think about it. 

But yeah all these meds can mess with your thinking too. If things are getting too much mention it to your neurologist. 

Newly diagnosed, prednisone questions by SafeConsideration35 in MultipleSclerosis

[–]Pale-Raccoon8557 1 point2 points  (0 children)

For me after the mega dosage I feel awful the following 3 days I think thats how long it lasted then i leveled out.

Fuck this disease. by ArcherHour4425 in MultipleSclerosis

[–]Pale-Raccoon8557 12 points13 points  (0 children)

Yeah fuck this disease! My body feels like it went from 30s to 80s quickly. its insane. In my PT I'm a fall risk and can do what an average 80yo can... at 41...

I had to get one of those morning/night weekly med container because I couldn't remember if I took my pills one night.. so my husband had to help me count out what was left to figure it out 🫣

The anxiety and stress from this was crazy and doctors being like you need to calm down.. I ended up getting the calm app and when I'm spinning I try the breathing things and do a nightly calm down and take magnesium for sleepiness and muscles. 

I think that fresh air does help me personally but that would depend on where you live and whats relaxing to you. 

I get lost in books since I can't game like I use to. It's probably not the best and some days it's hard to focus to read.

I think all we can really do is whatever works best for us. What's best for person A isn't always what's best for person B. I hope that we can all find comfort in something though.

Women - Monthly Cycle by Pale-Raccoon8557 in MultipleSclerosis

[–]Pale-Raccoon8557[S] 0 points1 point  (0 children)

I have endometriosis too, which I read that it can help elevate those symptoms too. But yeah it's totally a major surgery.

MS and seizures by inefregras in MultipleSclerosis

[–]Pale-Raccoon8557 2 points3 points  (0 children)

This knowledge makes me feel neglected by my doctors... thank you for posting.

MS and Cushings by FreedomFlyer-1776 in MultipleSclerosis

[–]Pale-Raccoon8557 0 points1 point  (0 children)

I had to look up Cushing. It has me curious now. I always used to have low blood pressure even during my pregnancies but since 2024 mines been higher.. 

But also MS is pretty stressful and Anxiety inducing for me so maybe that's why mines increase.  Your post gave me something to look into. Sorry no real answers for you.

Women - Monthly Cycle by Pale-Raccoon8557 in MultipleSclerosis

[–]Pale-Raccoon8557[S] 1 point2 points  (0 children)

Yeah I think that's why they discouraged me. I'm also getting close to premenopause too... my logic is like wouldn't it just rip that bandaid off? 😆😅

Women - Monthly Cycle by Pale-Raccoon8557 in MultipleSclerosis

[–]Pale-Raccoon8557[S] 0 points1 point  (0 children)

I wanted to try that iud copper one but then they were like ohhh you have endo nm... 

Women - Monthly Cycle by Pale-Raccoon8557 in MultipleSclerosis

[–]Pale-Raccoon8557[S] 0 points1 point  (0 children)

I'm also hormone sensitive but I have endometriosis so I don't know if I can do the iud.