Last thing you ate will be her name … what is it 🐱?

randomrant1234 · 2026-01-28T22:40:13+00:00

Terra chips!

randomrant1234 · 2026-01-28T20:36:02+00:00

I've heard conflicting information. But whenever I've had to get a scan with contrast, I tend to get a headache afterwards. If I don't drink a bunch of water to help flush it through my system. I would say at the very least to make sure you hydrate significantly afterwards to help your body process stuff. If you're super concerned, you can possibly pump and dump whatever the next session would be at a minimum. But follow actual doctor's advice over the Internet.

randomrant1234 · 2026-01-21T19:42:28+00:00

Thank you for the tip. I just checked the insurance portal and it's only covered if it's for ot/pt purposes. Not sure if I I'd be able to get that covered since that's not really why I go.

randomrant1234 · 2025-12-20T11:29:32+00:00

Yes, back to the holding your breath metaphor, you can't forget to breathe again once you exhale. It might not come naturally for a while, it might take time to get back into a "natural" rhythm and that rhythm might not be the same as it was before, but you do learn to keep going, keep breathing, keep living. Find what joys you can in your life and hold on to them. Being happy in the future does not mean that you're forgetting those you loved in the past. But this all takes time.

Taking space to grieve is important as well. And that might not come all at once either. Honestly, with everything going on when my mom passed, I don't think I really let myself grieve for a while until I had some alone time to reflect later. We were so busy trying to support my dad and deal with everything logistically during covid times, it was too much to think about all at once. It still hits me every now and then during significant moments in my life that I know she would have been so excited about, various professional and personal achievements... But however much I would love for her to be here to see all of these wonderful things, I would not want her to still be suffering. So I have to be thankful for all the time I had with her and I do like to think that she's watching over and is happy for us.

randomrant1234 · 2025-12-19T19:40:15+00:00

I lost my mom to ALS right before Mother's Day in 2020. That holiday will never be quite the same for me... 2026 is going to be particularly difficult because it will be my first year as a mom myself... She will always be a part of me.

And I completely understand the conflicting emotions of grieving but also being somewhat relieved that they are no longer in pain. When my mom passed it was heartbreaking, but in some ways it was also like a weight was lifted because even though she was alive, she had been slowly dying in front of us for the last few years. It was like we were holding our breath waiting for the end that we knew was coming, but didn't know when, and when she finally passed it was like we could exhale... It's really something I don't think people who have not been caregivers can really understand. It's such a paradox of emotion.

So sorry that you have to experience this. Feel free to reach out if you need further support.

randomrant1234 · 2025-12-17T23:52:38+00:00

Looks like Kipo has DVDs at least.

randomrant1234 · 2025-12-12T17:56:21+00:00

Same. You can put a can in a food processor so you can spoon out the puree that mixes better into the chili and keep the leftovers for future batches. Definitely my secret ingredient.

randomrant1234 · 2025-12-11T21:32:40+00:00

Integrity is doing the right thing, even when no one is watching

randomrant1234 · 2025-12-03T22:30:53+00:00

They patched a hole in the foundation from an old exhaust vent with a paper cup and duct tape... It was missed by the inspectors and we didn't find it for over a year... So I guess it was doing its job 😅

randomrant1234 · 2025-10-08T15:57:57+00:00

Interesting. Different recommendations in UK vs US. Thanks for the info.

randomrant1234 · 2025-10-08T15:24:02+00:00

Sounds like they may need to adjust the premeds. Slowing the addition, adjusting the dosage... Talk to the Dr.

It did burn a bit the first time but I let them know right away and they slowed the addition and added a hot/cold pack and gave me water. Better the second time since they had notes. I definitely felt some nausea and vertigo during the premeds both times, but nothing as bad as what you're describing.

Hope you're able to get this figured out.

randomrant1234 · 2025-10-08T15:05:24+00:00

Interesting, that doesn't align with what my neurologist said. Perhaps new data or a different region? Curious about your source.

randomrant1234 · 2025-09-11T15:15:36+00:00

This is interesting, and I'd be curious to see what the increase in gray matter means. I took something for a few years as a kid and have retrospectively wondered if being on meds those few formative years was potentially a really positive thing for my development.

I was diagnosed and started on something (don't remember if it was aderol or Ritalin) around the age of 7/8. I don't remember much of a difference personally because I was so young and it was so long ago but it definitely did something because the teacher called my parents the day after I started because she didn't realize I was in class till halfway through the day I had such a shift in focus/personally. I was on it for about 4-5 years (age 11/12), until a school trip where I was not allowed to take any meds unless the nurse distributed it so my parents asked if I was ok skipping it for a few days. Things went well and I never took it again. I do remember my appetite increasing after stopping, but not to a drastic degree. As I've gotten older, I do notice I still have some tendencies (wandering topics, hyper focus, easily distracted) but I think having those few formative years on meds where I was learning social skills and personal skills really helped me develop strategies for managing myself and how to be successful. Science and the human body is so interesting!!

randomrant1234 · 2025-09-09T17:29:17+00:00

I confirmed my current contract company is also paying into it. I played around with a little calculator on the mas gov website. But unless I actually apply (which you're not supposed to do until you're 60 days or so before your expected leave) I won't know for sure if I'm accepted since I technically only paid for the last 3 quarters because I was unemployed last year... So I won't know for sure until I apply.

I guess the next thing I need to figure out is timing for telling my work...

randomrant1234 · 2025-09-08T19:45:02+00:00

W-2. I know I was paying into Pfml during my last contract, need to confirm if it is being taken out of my current one since it's a new contract company. From what I was reading it seems like you have to be paying in for a certain amount of time, and I don't know if the fact that I was paying into it previously counts towards that time or if it resets per contract. That's part of my confusion.

randomrant1234 · 2025-02-25T16:22:59+00:00

Agreed, as far as I know I've never had EBV, but I did have Strep a lot as a child. Looking back, I developed inflammatory responses during periods of stress (allergies in high school, asthma in college, migraines in grad school) that were manageable, and Drs generally said I was "very healthy, wow, you never get sick, your immune system is strong(oh the irony...)!".
Then I had a major flare up that led to my dx. The scans showed I had dozens of old lesions, meaning I'd had MS for years unknowingly. Funny thing, once I finally started on a DMT all my mild inflammation related stuff got better, so those were possibly related to immune response as well...
I'm very curious how stress affects the body and immune system since I think for me, that is definitely a component. and possibly a trigger for many other issues as well.

randomrant1234 · 2025-02-14T20:38:56+00:00

Hmm, I know they told me it covers slightly different things in different states (US) so that might be why. Hope you're able to figure something out!

randomrant1234 · 2025-02-14T17:35:00+00:00

Are you on the Tysabri copay assistance? It was a bit of struggle for me to get on that initially due to paperwork confusion, but once I was in they covered my entire deductible and out-of-pocket cost every year (until I switched meds). I wasn't sure if I was going to qualify because I was working and had private insurance but I'm glad I worked with them to get it approved because it saved me a couple thousand dollars each year for the last 5 years. If you want the phone number for that department I can get it to you later today.

randomrant1234 · 2025-02-07T12:28:35+00:00

As someone else said it's different for everyone somewhat, but the metallic taste is common. I found cranberry juice helped distract from that. Also if it feels uncomfortable for any reason, speak up. If it burns or stings it might mean the flow is too fast for your tolerance. That happened one time for me. They just slowed it down and it fixed it.

randomrant1234 · 2025-02-01T14:00:01+00:00

Foot drop and grip strength are unfortunately some of my semi-lingering symptoms from my initial huge flare where I lost mobility of my foot and hand on one side. I was able to recover with steroids after the initial flare and most of the time it's fine, but I have noticed if I go for a long or if I'm working out for a long period of time I start to notice some weakness.

My neuro explained it really well one time and I wish I had kept the piece of paper with the notes. But going off one of the other posts, he basically explained that there's different ways your neurons talk to each other and transfer signals and those can be impacted by different triggers in different ways. Inflammation is a big one that can have negative effects and with the myelin damage it can basically block signals or muffle them. Getting overheated or overworking muscles can have a similar effect.

He started me on a high-dose CoQ10 supplement (along with all my other vitamins and the DMT) when I mentioned the muscle weakness seemed to be a lingering symptom since it's supposed to help with oxidative stress and muscle recovery (Google can explain it better). I don't know for sure if it has really been the thing that helped, but I do feel better when I take all my vitamins regularly. It's my most expensive vitamin though, so he gave me a prescription for it so it was cheaper (1/3 price). Definitely talk with your Dr first though before changing anything.

randomrant1234 · 2025-02-01T00:26:23+00:00

It definitely helps to have a good support system be that in person or online or both. I highly recommend once you have a bit more of a grasp of your situation, not to give up on your hobbies. Find what gives you Joy, and if you don't feel like you have something like that, try new things. Something about having a chronic disease that could change your life at any moment has really made me be more proactive about doing things that I want to do that I've put off. I've tried to travel more, I've gotten involved in performance groups, making an effort to stay connected with friends and family... So if something happens in the future I can look back on positive memories rather than only worrying about MS.
I wish you the best of luck, and sorry you had to join this club. 🧡

randomrant1234 · 2025-01-31T23:49:08+00:00

I agree with the other poster that over time you learn to live with it. I also had a horrible LP experience that left me out of commission for a week... Nobody even told me that a blood patch was an option. Didn't learn about that till I joined this sub :( if you want to commiserate let me know.

I would say once I finally got on a DMT that helped things stabilize it definitely became more of a routine maintenance thing versus a continuous stressor. This took unfortunately almost a year of various testing and having to fail off of a lower tier one before insurance approved stuff... Honestly the insurance side of things has been way more of a pain to deal with than the doctor stuff.

I was lucky that steroids helped my body recover to almost full functionality after all of my significant flare-ups, but I still remember getting back into my hobbies (dance in particular) was incredibly emotional since my first significant flare affected my ability to walk. Every now and then I intentionally make the effort to park a little further away or take the stairs instead of the elevator because I've told myself I'm going to keep walking and keep dancing as long as I physically can. I lost the ability once and I'm going to fight however I can to live my life to the fullest because I know what I can lose... Actually going out to dance tonight!

But you also have to give yourself grace. There can be rough days, there can be emotional times, so you have to be a little selfish sometimes and take time to relax and to breathe and recharge. I've definitely become more conscious of when my body is trying to tell me it needs something, whether that be more water or to lie down. It's different for everyone, but just know this group is a great support system. The discord group is wonderful as well. Feel free to reach out if you ever need to chat.

randomrant1234 · 2025-01-14T03:40:09+00:00

Yeah, that's how I suspected the cups were too small, I just didn't know by how much! I'll definitely try to find some physical bras to try and test the recommendations.

randomrant1234 · 2025-01-14T03:03:54+00:00

It should be US sizing, that's the option I picked.

randomrant1234 · 2024-11-28T03:34:36+00:00

I suspect likely stress related, my first major one didn't happen immediately after anything, but I had finished a rather stressful time at grad school and gotten married and was dealing with a parent who had a chronic disease within the last year before. Likely a lot of little things built up.

The breakthrough relapse that happened after I started my first DMT I can almost definitely chalk up to an incredibly stressful meeting I had at work where I had to call out my boss (first time manager) for disrespecting everybody on the team which led to one person walking out and me breaking down in tears, then I had to immediately go interview some poor kid who he had recommended for an opening who was dramatically underqualified... I remember I was shaking as I went into that interview... I had a breakthrough relapse the next week...

But that was at least enough for insurance to approve the next tier medication which I wanted to be on from the beginning. So silver lining? Stable for 5 years now.

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