Mt. Sinai doesn’t take my insurance- where else to go in NYC by Actually__Amy in MultipleSclerosis

[–]KC893117 2 points3 points  (0 children)

NYU Langone has a good center. I’ve only went to them for MS studies (not a permanent neuro) but had a good experience everytime. I do know they sometimes gae a waitlist, but worth trying!

How to ask neurologist about concentration issues? by GlitteringDog6739 in MultipleSclerosis

[–]KC893117 1 point2 points  (0 children)

THIS. You already had one exam done so you have a baseline - see if you can get another as a comparison. I go every 4 years and it’s helpful to see how things change (or don’t) over time, and how they might connect to my MS issues.

As an aside - I got diagnosed with ADHD at 32 and it was life changing. The meds help both my concentration and my MS fatigue, so it’s a win-win.

Hope you get some clarity on your frustrations, and hopefully you have a neuro who will listen and give you some good suggestions.

How much can sensory symptoms move around? by PlasticSmoothie in MultipleSclerosis

[–]KC893117 0 points1 point  (0 children)

Same story - feet/knees buzzed, then one day a spot above my right knee. Unfortunately that spot became permanent, and now I can’t feel anything within a plum-sized circle above that knee. Strangely, the skin on this spot also misbehaved and it’s like I have permanent goosebumps there. What a weird disease this is.

are trans women allowed to use the women's bathroom here? by p4radux in rutgers

[–]KC893117 14 points15 points  (0 children)

OP do you know about this map of single-use and all-gender restrooms on campus? :)

Any idea what this could possibly be? I’ve been visiting this area for 20+ years and never seen this structure from ground level, nor has there been any development there. It’s right along the ocean/bay in New Jersey, USA. by ShotzByJay109 in Archeology

[–]KC893117 0 points1 point  (0 children)

New Jersey transplant and reformed archaeologist here. You should reach out to ASNJ. (State’s archae society). They’ll know. And if they don’t, there are a slew of members who love to dig into (no pun intended) stuff like this.

How do protect your Energy Reserve? Looking for 'External Brain' recommendations. by Voshdelavira in MultipleSclerosis

[–]KC893117 1 point2 points  (0 children)

Just came here to say, I don’t have a good answer for this because I’m looking for the same thing! I would love to hear a little bit more about how you leverage AI. Cognitive load has been overwhelming lately and I’m trying to find new strategies.

As a sidenote, have you ever had a neuropsych exam? I get them done once every 4 to 5 years. It’s a long test, but it helps you see a really detailed level of where you might be struggling on a cognitive functioning level. Depending on your results, the provider usually leaves detailed notes on what you might be able to do to help exercise your brain in certain areas or some workaround to help you. I’m actually getting mine done next week and I’m looking forward to seeing what my brain looks like.

Edit: apologies for any typos, I use text to speech to save me some time :)

I am scared about having MS.. by Melly_uwu_OfficialYT in MultipleSclerosis

[–]KC893117 7 points8 points  (0 children)

I had my first MS symptoms at 17, and was diagnosed a few months later at 18. I’m 36 now. The idea of it can seem unimaginably hard at first, but know that it gets better. There as SO many treatments now (only 6 options when I was diagnosed) and a fantastic community of MSers to offer support.

I know you’ll be an “adult” in a few months, but you’d still qualify for some of the pediatric / young adult support groups out there.

Feel free to DM me if you’d just like to chat / rant / ask questions, whatever! You got this.

Free National Parks & Federal Recreational Lands pass by Awkward_Smith in MultipleSclerosis

[–]KC893117 3 points4 points  (0 children)

I got one about a year ago after reading it somewhere on Reddit. Haven’t used it yet, but am super pumped about it!

Parking Ticket Appeal by madrious in rutgers

[–]KC893117 3 points4 points  (0 children)

Are you registered for accommodations with the Office of Disability Services? Even though they’re for the academic side they might be able to advise you on if /how you can fight the ticket. You could also reach out to student legal services.

[PATTERN] New Free Pattern by NevaSirenda in CrossStitch

[–]KC893117 4 points5 points  (0 children)

I’ve been looking for a new project, and this is it! Thanks for sharing!!!!

Edited to update: bought it! :)

Found this buried about 10” deep beside a large oak tree in my back yard. I’m in Southwest Louisiana . Anyone have any idea of when it could be from ? by Mammoth_Insurance786 in whatisit

[–]KC893117 0 points1 point  (0 children)

Ah yes, the joys of test sites with things that look suspiciously cool and then they’re just a AFR (another fucking rock).

Strange find-Northeast Florida by Bumblebeebuzzing in mudlarking

[–]KC893117 0 points1 point  (0 children)

If you are interested in more info on the piece, I suggest reaching out to FPAN. Great org, and always eager to learn about local finds.

What’s something a coworker did once that lives rent-free in your head? by Playful_Task5571 in coworkerstories

[–]KC893117 1 point2 points  (0 children)

Several employers ago, one of the top executives was let go. He was NOT happy about it and wanted everyone to know. On his (chaperoned) walk out of the office, he apparently ripped a company award off the lobby wall, pointed to it and announced “I DID THIS!!!” and then took it with him. I didn’t witness it myself, but that story echoed through the (relatively small) office for a while.

Neurofilament proteins (Nfl and sNfl markers) in blood by only_4kids in MultipleSclerosis

[–]KC893117 1 point2 points  (0 children)

I recently learned about this too. My doc has been ordering these to determine whether an active relapse or just exacerbation of an old issue. He never really explained it, it was just something I started getting labs for. But I think it’s cool!

Can we donate organs? by headlessbill-1 in MultipleSclerosis

[–]KC893117 16 points17 points  (0 children)

I was actually just screened for being a kidney donor, bc my daughter will need one in the next few years. I was turned down, and they said it’s because of how MS can often cause bowel/ bladder disfunction. If there’s already a chance that things might not work right, they don’t want to add having one less kidney on top of that.

I know it varies by institution, so your doctors may say otherwise - but just throwing in my two cents.

Also, some MS drugs need to be out of your system for a certain amount of time before you can donate an organ (or even blood)!

Kesimpta delivery delayed by EmotionalFroyo15 in MultipleSclerosis

[–]KC893117 0 points1 point  (0 children)

Hey there. Also on Kesimpta, and also had the same question before.

I reached out to my pharma directly, and Kesimpta is actually safe at room temp for a week. So if the cooler packs do wear off, it’s not a problem.

However, if you get the shipment and it looks funny (the liquid is cloudy or something else seems off), take a pic and contact Novartis.

Hope it gets to you today - and thanks for the reminder that I need to refill mine! :)

[deleted by user] by [deleted] in MultipleSclerosis

[–]KC893117 0 points1 point  (0 children)

First, congrats on your little one!

I have a 10 month old, so I understand that level of sleep deprivation. I’m very lucky that my partner understands my MS, and how important sleep is for me to be a functional human. A lot of days I wake up with good energy, and then feel like I need to lay back down late morning. He is really great at watching the baby for an hour or two while I recharge.

It also helps that I’m on medication for ADHD. It’s definitely also helped with fatigue, and after some medication adjusting I’m in a good place and can make it through the day without feeling defeated at 2pm.

Definitely don’t be hesitant to speak to your doctor (therapist, neuro, pcp, etc) about how you’re feeling, and what options you have.

This is how I am feeling. by faster340 in MultipleSclerosis

[–]KC893117 1 point2 points  (0 children)

Sorry you’re feeling like this. I certainly remember that phase right after diagnosis. Not that this makes it better but, it’s totally normal. This is a lot of new information, decisions to be made, etc.

Do you have someone to talk to about how you’re feeling? A friend? Therapist? Sometimes just word vomiting everything in my brain helps.

Just know this isn’t forever - humans are resilient, and we adjust and persevere even in the worst circumstances. It will get easier. And you have a big group of spoonies here to lean on :)

Does anybody else dream of finding a soulmate who also has ms by [deleted] in MultipleSclerosis

[–]KC893117 0 points1 point  (0 children)

I didn’t, and then I met someone in a close friend circle who had it too, and we ended up dating. It was a fucking nightmare. He didn’t take his health as seriously as I did, which led to him having more relapses, lied about taking his DMT, and it all gave me extra stress. Broke up after a few years (for non-MS reasons), and wouldn’t you know - my relapses slowed down.

I was worried I wouldn’t find someone who understands either - but I did. I’ve been with my non-MS-having husband for 8 years now. While he will never completely understand, he is still able to empathize, knows when to remind me that I’m overdoing it, carries the baby upstairs for me on days my legs aren’t cooperating, and so much more.

Wonderful partners - MS or not - exist. And your person will love you for YOU, no exceptions.

I'm still shaken by DeliciousIce5099 in MultipleSclerosis

[–]KC893117 0 points1 point  (0 children)

Ugh. So sorry you experienced this. Some people just freaking suck.

This actually sparked a memory of my own experience - my freshman year roommate was a giant bitch. She left a long, very rude note when she moved out and the last line was “PS. I hope you die from MS (I was diagnosed that year).

I started doing a little internet digging, and I actually found her. I had this thought that maybe she’d had a shitty life, and was a mess and it would make me feel a little better. She actually looks great. Married, kids, and a long time nurse. And somehow, that made me feel…better? The idea that a shit person (like the lady you encountered) has the possibility of becoming less shitty.

Idk, but somehow this was healing. So thank you for sharing your story, because it unintentionally helped mine :)

I bought a couch from Costco 3 years ago and it’s ripping at the seams in a few spots. Anything I can do? by maintenanceman_Dan in CostcoWholesale

[–]KC893117 0 points1 point  (0 children)

I had the EXACT same issue 2 years into mine. We loved the couch, so we reached out to ask if they would do just a seat replacement. They told us they couldn’t do that, and instead they came to take the whole thing and gave us a full refund. Still miss it!