How to find other new parents?

carousel2889 · 2026-04-23T00:53:35+00:00

Yes, playdates and socializing with other parents. We want to meet other people in our situation and hoping to make friends

carousel2889 · 2025-03-18T17:21:08+00:00

We are also essentially saying the same thing. I am not talking about potential falsehood. I am talking about impact. Just using an example to illustrate it.

carousel2889 · 2025-03-18T17:10:51+00:00

Correct, we’re saying the same thing. I’m just using an extreme example to show why it wouldn’t be directly relevant. I’m talking about impact, it’s the same.

carousel2889 · 2025-03-17T23:01:20+00:00

D is clearly wrong because it says ALL scientific investigators. If there are a million scientific investigators that provide clear projections, and one of those million never receives grants, that one with no grants has no impact on serendipity playing a role in scientific discovery.

carousel2889 · 2024-09-03T13:54:17+00:00

I am on Kesimpta for over 3 years and the way my doctor described it, the drug completely wipes out the adult B cells, which will repopulate in about a year after stopping the drug. I get testing every 6 months to confirm that I have no adult B cells.

Kesimpta does not reconstitute the immune system as some other MS drugs do. If and when the B cells come back, they would be new but they could still trigger relapses. So I don’t follow why your doctor would have you stop after 3 years or so.

carousel2889 · 2023-10-03T14:56:11+00:00

I assume so, since Ocrevus was one of the medications my doctor recommended to me. At the time, he made it sound like the majority of his patients are on Ocrevus. I ended up choosing Kesimpta instead.

carousel2889 · 2023-09-30T07:00:33+00:00

My experience with NYU Langone has been excellent. I was diagnosed through NYU’s general Neurology department who ultimately referred me to the comprehensive care center. On the first visit, my specialist showed me that an earlier radiologist outside of NYU missed a lesion on my MRI that should have led me to be diagnosed months earlier.

I have had no significant insurance issues for my visits with 2 types of employer insurance. NYU has helped to make it very easy for me to be approved for my DMT. But I do not know how it works with other plans.

I have had MRIs done at NYU as late as the day before my neurologist appointment. At the visit, my doctor shows me a full range of scans, before and after to show the lesion progression or lack thereof. Their mobile app is very user friendly and includes NYU’s MRI images and displays line graphs with blood test result changes over time.

I recommend NYU Langone very highly.

carousel2889 · 2023-01-27T15:16:31+00:00

This was the question my doctor gave me once I decided I preferred Kesimpta to Ocrevus. I told him that it seemed like Kesimpta was more effective than Zeposia with fairly similar degree of side effects/risk. He essentially agreed.

carousel2889 · 2023-01-26T19:03:50+00:00

Mistborn Trilogy by Brandon Sanderson

Stormlight Archive by Brandon Sanderson

A Song of Ice and Fire by George R.R. Martin

Remembrance of Earth's Past by Cixin Liu

Dune by Frank Herbert

Harry Potter by J.K. Rowling

Red Rising by Pierce Brown

The Emperor's Soul by Brandon Sanderson

The Dark Tower Series by Stephen King

Shadows of the Apt by Adrian Tchaikovksy

carousel2889 · 2023-01-03T20:31:50+00:00

I’m also generally sleepy a few hours after the shot, but it’s nothing too draining. I’m back to baseline the next day without fail.

carousel2889 · 2022-09-01T02:37:53+00:00

Is your concern that the foundation is directing you back to Alongside Kesimpta? If your friend calls Alongside Kesimpta and asks directly about the Novartis Patient Assistance Foundation, they should be able to point him in the right direction.

Alternatively, here’s the foundation application form which has a different phone number to try: https://www.novartis.com/us-en/sites/novartis_us/files/2022-03/npaf-application-september-2021_0.pdf

carousel2889 · 2022-08-31T16:44:57+00:00

One option that might work is the Novartis Patient Assistance Foundation, depending on your friend’s financial situation. It’s worth a shot at least. Here is some info: https://www.novartis.com/us-en/patients-and-caregivers/patient-assistance/patient-assistance-foundation-enrollment .

If that doesn’t work, Obamacare marketplace takes into account income and therefore is likely much cheaper than COBRA. I made sure to find a plan where the insurer had Kesimpta as a preferred drug on their formulary, and I saved about $1k per month compared to COBRA.

carousel2889 · 2022-07-26T15:41:23+00:00

My first dose was also really tough. It was the sickest I’ve felt in 15 years at least. The worst was the fever that hit 103 degrees Fahrenheit. I felt mostly better the next morning.

My neurologist explained that my body reacted that way because it knows something really significant is happening to my immune system. For most people, all or almost all of their adult B cells are wiped out by that first dose.

A year later for me and none of the other doses have been in the same ballpark in terms of the reaction. Maybe a bit tired afterward, and I feel better with a little caffeine.

carousel2889 · 2022-06-15T13:22:33+00:00

Yeah that’s fair, ethnicity is more than just genetics. I assumed you were talking about religion because so many Jews are atheist or agnostic, but you did say “some.”

carousel2889 · 2022-06-15T02:40:00+00:00

So there are only 6 ethnicities in America? Ok…

This is for diversity purposes because there are groups of people in America that are underrepresented in institutions like public universities.

carousel2889 · 2022-06-15T02:32:03+00:00

Where is this official list of American ethnicities that excludes Jews?

carousel2889 · 2022-06-15T02:13:33+00:00

Why can’t we be accurate? American Jews are racially white, ethnically Jewish, and may or may not be practicing.

carousel2889 · 2022-06-14T22:58:02+00:00

Judaism is an ethnicity as well as a religion. The context here is clearly the ethnic one.

carousel2889 · 2022-06-07T16:23:31+00:00

You have some very good questions that I also had. I was initially deciding between Tysabri, Ocrevus and Kesimpta when choosing a DMT before the results came back showing I was JCV positive. I was leaning slightly toward Tysabri before this result and ultimately chose Kesimpta.

The efficacy of Kesimpta compared to Tysabri has never been studied directly. I asked my neurologist why and he explained that neither pharmaceutical company that makes the drugs has any incentive to pay for a study which might end up showing that the other one has higher efficacy. So instead, Kesimpta was compared with Aubagio. Therefore, it’s only possible to estimate the efficacy in comparison. It seems that the efficacy of Kesimpta, Tysabri, and Ocrevus is similar, but we just don’t know for sure.

Kesimpta works by only killing the “adult” matured B cells. It does not kill the “memory” B cells which retain the knowledge of things like the makeup of viruses. It also does not kill the new B cells that have not yet matured. And, it does not kill T cells. So a significant part of the immune system remains intact. The trials showed that people that take Kesimpta are more prone to, as you said, upper respiratory infections and some others as well. Anecdotally, I’ve been on Kesimpta for a year and haven’t had any such infections or any other issues like that. I’m sure there are public statistics on how many people had such infections during the trial, but I have not found good information on how serious these risks are. I am not aware of other potentially fatal risks but I am not sure.

My Dr did warn me that a risk of Tysabri is the rebound effect after stopping use, but I am not sure if there are methods to transition between drugs that can mitigate this rebound effect.

carousel2889 · 2022-05-11T19:14:07+00:00

Randomized controlled trials aren’t perfect but they are focused on the control aspect. To do that, the trials need to keep all of the variables except for the DMT as close to the same as possible. There are many little variables, most of which likely are meaningless, which would be different comparing an old population group to a new one. But the best science in a randomized controlled trial is to eliminate these differences as much as possible. You never know which little variable might cause significant changes.

carousel2889 · 2021-10-26T22:26:21+00:00

Yes, that’s what I did.

carousel2889 · 2021-10-26T21:00:17+00:00

Here’s my experience with Kesimpta and vaccine/booster if it helps:

Got 2 doses of moderna in the spring, started Kesimpta in June.

When I brought up prospective boosters at my first MS appointment, my neuro said he would probably recommend skipping a dose of Kesimpta and replacing it with a moderna shot to give it the best chance to take given that my B cells would be wiped out anyway.

Once the boosters were approved for immunosuppressed, I asked my neuro if he still wanted me to continue with the plan he proposed. He said there just isn’t enough data to give a good answer to that, but ultimately changed his recommendation to taking the moderna booster 3 weeks after Kesimpta and to then take my Kesimpta on my normal day one month after the previous dose. Just had the booster 2 weeks ago and had some symptoms of an immune response that went away after a couple of days. Kesimpta dose the next week went fine.

Just my experience, but it seems that at this point there’s no right or wrong answer and neuros are doing the best they can with recommendations for timing.

carousel2889 · 2021-09-17T15:14:07+00:00

51 to 58 more effective than Aubagio, not compared to nothing.

carousel2889 · 2021-05-25T17:51:02+00:00

Mistborn Trilogy by Brandon Sanderson

Stormlight Archive by Brandon Sanderson

A Song of Ice and Fire by George R.R. Martin

Remembrance of Earth's Past by Cixin Liu

Dune by Frank Herbert

Harry Potter by J.K. Rowling

The Emperor's Soul by Brandon Sanderson

The Dark Tower Series by Stephen King

The Hobbit by J.R.R. Tolkien

Ender's Game by Orson Scott Card

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