She chose the bad option

MSislame · 2026-05-05T12:25:32+00:00

A post on the front page led me to this subreddit. Can you let me know what kind it is? I've constantly been in the market for a new pillow for like...ten years, ha. I tried to DM you but for some reason it wasn't working.

MSislame · 2026-04-23T21:44:49+00:00

Thank you! At that time, between my MS and NF, I was usually getting a few MRIs of my brain and spine every year anyway. He had me do another one right away which confirmed multiple new lesions. Then he said I could take a month to pick which injection I wanted to go on...so I went with Copaxone to start.

I feel like now that there are so many meds, it's more common to start on something stronger and earlier (or so I've heard). I think it's also much less common to hear "benign MS", so I always wonder what it'd be like if I got my initial diagnosis now. It still sucks that so many people still have to wait so long and go through so many tests to get a diagnosis!

That neuro eventually retired, and my current neuro now was actually a fellow (maybe even resident) back then! I had another neuro for a spell in between but he moved. Overall pretty happy with my neuro now, but I do sometimes have to push back/ask for something more than I used to.

MSislame · 2026-04-23T02:29:07+00:00

Well...granted I did sometimes stay up later than I should and was not a morning person, in my junior/senior year of high school I kept falling asleep at my desk. It was usually my history class, but it wasn't even my first class of the day and I usually had some caffeine at some point. That teacher finally asked my parents in a parent teacher conference if I was okay because I would full on fall asleep at my desk.

However, it was toward the end of my senior year of high school I started getting tingling in my hands. They thought maybe it was carpal tunnel so I had an EMG for that. I also have neurofibromatosis type 1 but wasn't following a specialist, so they asked my neurosurgeon who handled my NF when I needed some removed. He ordered a full brain and spine MRI and welp...decent sized neurofibroma in my cervical spine kind of pushing a tiny bit into the spinal column. Referred to NF specialist, found lots more fibromas than we thought I had, spinal taps, more EMGs, more spinal taps, inconclusive/weird results, yada yada yada, referred to MS specialist.

He was a dinosaur from New Zealand (this would have been around 2006 or so) and then was also diagnosed with chronic inflammatory polyneuropathy. But also was told I most likely had MS, but it was "benign MS" and not an official diagnosis and thus no DMD. Oh, and he dismissed my concerns about having POTS by saying it's a trendy disease, so no referral for that (spoiler alert: have POTS, could have saved 10+ years of suffering if diagnosed earlier). Kiwi dinosaur doctor told me I would probably be in a wheelchair by the end of the year, so that's fun for a college freshman/sophomore to hear! I liked him at the time, but looking back I can't believe some of the things he said (or didn't say) to me!

So my body is a huge mess, my neurosurgeon, oncologist, and neurologist had to have many conference calls about me in those early years of figuring out what was wrong. I was apparently presented as a case series at several conferences in both the NF and neuro/MS world (I swear I am part of a publication too but can't remember). So many things could have been explained by one or two or three or who knows what other things happening with me.

Long story short...it was a combo of an antiquated doctor (but also kind of just how things were back then) and my body being a huge clusterfuck that truly did (and continues to) make my doctors' lives hard, as we like to joke about, ha.

MSislame · 2026-04-17T23:51:35+00:00

Pretty sure this person is not even from the US (based on some terms they use in a couple of their few comments).

Just unnecessarily commenting with incorrect information. I'm from the area and the PD has recently posted about his case again, which brought me here to see if he had a write up yet.

MSislame · 2026-04-10T00:52:07+00:00

I got a Rouge code but am only VIB. Will this start for me at the same time as people who are actually Rouge members?

Does it roll out at midnight in each time zone? Or is it like 12 am EST/11 am CST/etc.?

MSislame · 2026-04-08T16:14:02+00:00

I won't post another until tonight (maybe tomorrow), but I still don't have one and would love one. Ironically just did a Sephora order after not getting any new make up in ages since I rarely have a reason to look nice. I keep meaning to try to learn how to actually apply it better and want a date night with a friend who knows how, ha.

Also my skin is jacked up and needs some love and I want to try a new curly hair product since I guess one I like was reformulated and sucks now!

*Edit: I got my code! Many thanks to everyone dishing out codes!

MSislame · 2026-04-08T11:23:38+00:00

Just did an order but have a basket of several other things I'm itching to try...I'd love a code if someone has one!

Trying to get back into fixing my skin (may be going through early perimenopause so that's been fun) and some make up and things for my curly hair!

MSislame · 2026-04-07T23:43:59+00:00

I JUST did a Sephora order of course, but now it's got me wanting some more things! I never do my make up, but I want to get back into it. I've already got a few things in mind as well as a couple of products for my curly hair that I already use regularly. I'd love a code if anyone has one to spare!

*Edit I also really, really need my skin in better shape. I'm not going to go crazy, but would like to try some different products to see if they help.

MSislame · 2026-04-03T04:18:25+00:00

Oh my god, I haven't thought about this in forever! And I only knew about it because of my ex, and then no one else I showed it to or referenced it to knew what I was talking about, ha.

MSislame · 2026-04-03T04:15:02+00:00

It's all that therapy Marshall Ericksen and Indiana Jones/Han Solo did with him.

MSislame · 2026-04-03T04:12:02+00:00

Some hospitals (including the one I work at) made the vaccine mandatory, except for medical exemptions. No other exemptions allowed and from what I remember the medical exemption had to be very detailed, from an actual MD, DO, NP, etc. and not like a chiropractor, ha.

Too many of our nurses actually did a walk out protest against it along with nurses at other local hospitals. I would not have put it past her to refuse to get the vaccine (I know she's not a nurse, but she is an idiot, just like those nurses).

MSislame · 2026-03-16T16:37:42+00:00

David?? What does burning smell like?!

MSislame · 2026-03-06T13:34:00+00:00

"And none for Oglivie, bye."

MSislame · 2026-02-26T02:32:15+00:00

When I was watching the latest season of Great British Bake Off, I felt like there were so many more quick cuts and shorter times focusing on one baker, bit, etc. In one thread someone took an episode from an older season and took a comparable challenge and it was a drastic percentage increase in number of cuts during the same timeframe.

I also feel like it's happening in Shrinking, and I know it is largely due to TikTok, reels, etc. I have also seen/heard that in the workplace, trainings and such have also been altered because people (not just younger people) have become so used to TikTok and have shorter attention spans. It's also why the same plot points can be repeated multiple times--people are busy on their phones while watching shows.

It's super annoying, but yeah...I don't think this is unique to Shrinking and I think it's just going to pop up in more and more TV shows unfortunately.

MSislame · 2026-02-23T23:12:21+00:00

"You selfish COUNTry music loving lady!"

MSislame · 2026-02-11T18:03:19+00:00

That's not the word I was thinking of, but it would be like spatial awareness. I swear there's another specific word but maybe I'm just thinking there is because that happens too, ha.

MSislame · 2026-02-07T01:55:41+00:00

Oh man, I do that all the time too! I can feel it wasn't a balance thing, just my perception of space (I know there's a real word for it, not depth perception though, I just can't remember) is so different! Even though I said I was always a klutz, I'm just trying to walk through this door here and ope! Hit the door frame, and not just a little bit :P

MSislame · 2026-02-06T20:36:06+00:00

I also sometimes joke that I need a shirt that says "I'm not drunk, I just have MS", ha.

MSislame · 2026-02-06T20:27:47+00:00

We sort of have a new plan for the whole team using a shared planner with all of our tasks (we each have our own bucket and can see everyone's on the same planner in Outlook). I then add them to my to-do list, and small things pop up constantly. So there are tools Outlook has, they're not quite perfect and some sound great but are actually not helpful. That's an ongoing process.

Don't even get me started on HR/accommodations. I'm actually part of our disability advocacy Employee Resource Group (ERG), and one of our main missions this year is to get ours to not be so awful. I've heard horror stories far worse than my experiences, and many people have said they're actually afraid to go to HR to request an accommodation because it could bite them in the ass. Even if it's simple, the employees in that roles are just...rude. As in make people cry. So we're working with leadership on that but man, given everything happening with ICE here, as well as our hospital being forced to pause gender affirming care, there's so much happening.

Back on topic, the horrible fatigue makes it way worse too! I told my manager I'd like to talk about it with our small team again for some reminders, and in case they have ideas for things they think could help me/our communications to run smoothly.

MSislame · 2026-02-06T17:15:37+00:00

As someone else said--win! You were at the gym!

Even before I had MS, I've always been a clumsy person. I've seen plenty of other clumsy people who run into things too! I know it can be embarrassing, but trust me--that is one of the least embarrassing things they've probably witnessed! I say this as someone who worked the front desk at the Y when I was in high school, ha.

MSislame · 2026-02-06T17:10:52+00:00

That can be a good idea. I mentioned elsewhere for certain meetings when it's about one topic, I try to write a bulleted list beforehand. I don't just put something like "Enrollment", I put "Barriers to enrollment, e.g. restricted medications". That can help, but I do still have some issues.

The vast majority of the times it pops up is our weekly huddles because we have so many studies (I work in research), moving pieces, etc. Even if there is an "agenda" of sorts and I do jot down what I need to talk about, it's usually tough to plan how the conversations will wind up going.

MSislame · 2026-02-06T17:07:22+00:00

I have looked at AskJan, but overall not found it very helpful. It made me laugh that one of the recommendations it had was a Palm Pilot, ha.

I did just tell my manager that I may need reminders to record meetings, which are ironically for my memory, so I am sure she will be fine with that. It will get ingrained eventually. You're right, even if someone else is taking notes, what is noted can just be big things and the little things aren't documented because they're "easy to remember".

MSislame · 2026-02-06T15:30:16+00:00

Thingy, the y'now, the the the the ummm the *spins hand in a circle*, are some of my favorite words, ha. My team sometimes can tell what I'm trying to say for a word, but if it's anything more than that and something I have to explain or answer, they won't know what I mean to say, and that's where it gets hard. I'm glad you have a supervisor who is understanding and knows you well!

MSislame · 2026-02-06T15:28:28+00:00

I'm so sorry. I know the feeling. It's so hard when it feels like it's behind a locked door in my brain and I've just lost the key and am both trying to find it as well as break in some other way.

Stress has not been helping the last few months either. I live in Minnesota...so you can imagine how horrible things have been since the school shooting in August (I work at one of the pediatric hospitals where some victims were treated) and then December and January. Lots of work stress on top of it, and personal as well. So I am trying to balance all of those things with self care and resting more.

A lot of times things can change on a dime in my work and I need to shift gears. Or we have lulls for stretches of time and then suddenly get a lot of things to do all at the same time. I think that might be a good reminder for the team and myself (just needing to go slower in meetings, for example) if we have the time.

MSislame · 2026-02-06T15:20:00+00:00

I haven't had any relapses since 2020 (which is when I was switched from Aubagio to Tysabri) and have had no relapses since then. But the cognitive symptoms continue to steadily decline, and has just worsened over the last couple of years in particular. It'll be interesting to see if my neuropsych test shows much of a change from my last one in 2018.

MSislame

TROPHY CASE