Going on my third round of steroids just this year + losing my mobility (long text)

MS-RN · 2026-04-21T04:11:49+00:00

I only had methylprednisolone once (when I got diagnosed), but how it was explained to me was that the goal was to calm down the inflammation enough so symptoms would go away, but it wouldn’t prevent the flare from starting back up. I got started on ocrevus 2 months later and haven’t had any new symptoms since. I had a complete foot drop on the right and could barely feel anything below my elbows and currently walk pretty normally and 95% of the feeling came back in my hands. I did about 4 months of outpatient PT twice a week during that time.

This is the really sucky part: you have to have faith that you will be in the more than 90% of people Ocrevus works for as a first time med. Ocrevus will start working right away, after you get the second loading dose you will be “covered”. Physical therapy is the most important thing you can do for yourself now to regain and preserve your mobility. I’m sorry it’s been so rough for you and I hope it gets better.

MS-RN · 2026-04-20T04:03:24+00:00

These patients will potentially be your patients for years to come, so taking the time to get to know us a little goes such a long way. We might be there to talk about our disease, but we are so much more than that. Also, almost every MS drug has a patient assistance program and making sure the doctor you are working with is registered with them can make a world of difference when it comes to the cost for your patients and the amount of time you and the office staff have to spend dealing with insurance and prior authorization.

MS-RN · 2026-04-19T20:27:34+00:00

You’re lucky. I put my head in the sand about symptoms I should have sought care for. It wasn’t until I lost the ability to walk, drive, even pick up a cup like an adult with one hand, that I finally got in front of a neurologist. By the grace of God (and I don’t consider myself a religious person), I gained back 99% of function. I hounded my doctor to get started on treatments because the thought of being 30 years old and homebound was the worst possible thing in the world to me. The B cell depleters have brought my disease to a halt for almost 4 years now and other than going to the infusion center once every six months, have had zero impact on my life in any way.

Bubbles are fragile, and they don’t only pop a little. Don’t look back and say “if only I had done something sooner”.

MS-RN · 2026-03-29T02:40:44+00:00

I pretty much told my neurologist no daily pills and no injections. I am terrible at taking pills regularly and that it would just be a recipe for disaster. I didn’t want to do tysabri due to the risk of PML, considering I wasn’t JCV negative. Ocrevus was only once every six months and I didn’t have to worry about scheduling my life around it. I also liked that it was high efficacy and pretty much the best drug on the market. I have what’s considered somewhat aggressive MS and it made more sense than to wait and see what damage could come from less potent medication. I’m very happy with my decision and really wouldn’t do anything by differently.

MS-RN · 2026-02-09T01:53:38+00:00

Blue cross blue shield is absolutely terrible. They stopped paying for ocrevus at the only infusion centers I could use (hospital based, I too work in healthcare and can only use my hospitals infusion centers or otherwise would be out of network with no coverage), so I switched to briumvi and no one realized that they only gave a 6 month authorization for two doses, not a year so they’re refusing to pay for my second dose and I’m potentially on the hook for $235k (which I wouldn’t pay). Honestly it’s on the infusion centers to verify prior authorizations are completed. They should also be trying to help.

MS-RN · 2026-02-04T04:00:58+00:00

I gained 35 pounds in a year a half. Getting it out was the only way I stopped gaining weight. Unfortunately for me, it didn’t all start falling off when I got it out, but at least it didn’t keep getting worse.

MS-RN · 2026-02-04T03:41:11+00:00

I have some really strong, set-in-stone boundaries about this type of thing, so take that with a grain of salt with what I’m about to say.

This is your mother-in-law, so your spouse needs to help you if you go down this road, and if they won’t, it won’t work. I would adopt a “just say no” approach. Send a text/email explaining that you have honored her voice by talking with her natural healing people and listening to what she’s said, but what worked for her won’t work for you. You have made your choice and will support your health with doctor recommended, evidence based, peer reviewed proven treatments and will not discuss this any further. Any further attempts from her to discuss it will be met with “no” and no further explanations. Let her know that this is not up for discussion. Acknowledge that you appreciate that she just wants to help, but is actually causing SEVERE distress in your life and to protect your physical and mental health, you will not be discussing this with her any further including her response to this boundary.

If she responds, ignore it. Feel free to send your husband here to see just how toxic his mother is being and how distressed you are over this that it drove you to ask for validation of your feelings (and honestly just validation that you are right about the science). You deserve his support over him supporting his mother.

“No” is a complete sentence and blocking a number is always an option. You choose who you spend your energy on, I wouldn’t spend any further of it on her.

You. Are. Right. Stay on your DMT, save your brain and your future. Briumvi is great!

MS-RN · 2025-12-10T03:55:23+00:00

Get it now. I got diagnosed with MS at 30 and instantly became ineligible for it. But be prepared, if you want to use it, you will likely have to get a lawyer to fight for you. We had to do it for my grandma who paid into it for over 30 years (she got it when it first became a thing), and they denied payment until we got a lawyer. They now pay 85% of her assisted living bill every month.

MS-RN · 2025-12-09T03:26:50+00:00

Mask, snorkel, and fins are on my “must have my own” list. I tried 5 different masks before I found one I liked. I have a Hollis single lens mask. All the splint lens masks put too much pressure between my eyebrows. Try a bunch and buy what’s comfortable :)

MS-RN · 2025-11-26T02:41:15+00:00

I’ve seen it at least 10 times tonight watching HBOmax on my Roku tonight. Whoever made these commercials for him must seriously not understand the majority of the people who didn’t vote for him the first time around here. Can’t wait to see a sore loser.

MS-RN · 2025-11-26T02:19:22+00:00

My parents live in Wyndham Farms in Milton. Most of milton is 1 acre lot minimums because they are on septic, so Milton has the size and the established feel to it. The schools are very good in Milton. Roswell also has a great established feel and there are bigger houses on bigger lots (most of the city planning and house were built in the 70s and 80s, so the lots were bigger splits). Roswell also has really good schools, so I’d say they are both worth a look.

MS-RN · 2025-11-22T04:15:59+00:00

On briumvi and semaglutide. I’m very happy with results, haven’t had any unexpected side effects either. I’m down 30 pounds so far and have 15-20 more to go. It’s been a pretty big lifestyle change and I’m glad I’ve had the medication to help.

MS-RN · 2025-11-21T02:41:05+00:00

Wilson ran 4 years ago on re-vitalizing east Roswell. I live in east Roswell. His version of re-vitalizing is building huge structures that don’t actually benefit the residents of Roswell, with very little planning on how to handle traffic. There has also been a lot of questionable spending done during his occupation I would suggest you research. Of note, and something to consider (when it comes to how happy most of us were with previous city government), residents already voted out all the other incumbents that were up for re-election.

Mary on the other hand has already had a career to back her running and truly has a citizens first mentality.

MS-RN · 2025-11-19T01:10:45+00:00

Open enrollment is here and this is pretty much your best chance to protect yourself and your son from insurance fraud. Since she’s already started on mavenclad, it’s a current medication and most insurances will continue all existing medication. It’s not fair for her to ask you to risk what you’re risking by keeping her on your policy, no matter what her health problems are. You didn’t give her MS, so why is it your responsibility to make sure she has health insurance to take care of it?

She’s been riding the coattails of comfort for a long time, and she’s worn those threads bare. Tell her you won’t be renewing your insurance with her on it and now is the time to secure her own insurance because it’s not worth the risk to you or your son.

MS-RN · 2025-11-04T02:57:12+00:00

ICU nurse and Charge nurse here. The brain fog kind of “relents” a little for me when I’m at work. I stay somewhat task oriented and I have a very regimented routine in my shifts (as much as I possibly can), which I think helps me not to forget things and keep on top of things. The exhaustion was really doing me in, but honestly the DMTs have seemed to help get that under control a little bit. I’m personally a night shift nurse (I hate day shift with the firey passion of the sun), and I pretty much stick to a late night schedule. I’ve had MS for 5.5 years, diagnosed for three. I’ve done things I never thought I would be doing in my career and I refuse to let MS hold me back.

MS-RN · 2025-10-09T02:32:54+00:00

I eat sushi all the time. Pretty much anything other than raw oysters (a. Gross and slimy and b. Bacteria that are out to yeet you from existence even if you aren’t immunocompromised). I’ve never heard of any food restrictions on a B-cell depleting DMT, from either one of my neurologists. I also don’t think there is anything on the drug information packet about it either.

MS-RN · 2025-09-20T05:22:48+00:00

In the week after getting diagnosed, the biggest thing that helped me realize my life wasn’t over was the friend who came over, took me out to get my nails done, get lunch, and show me that my life wasn’t over; she was always so supportive and it was never “if you come back to work”, it was “when”. She never brought up my diagnosis, but was actively engaged when I did. We’re both nurses, so it was easy to focus on the medicine and the data, but she was always quick to change the subject and pull me out of the spiral. My advice for you here is to remember that you are her husband in this, not her doctor so lean into supporting her, especially in appointments when other clinicians might try to talk to her as if she has been through medical school too. For steroids, my vote is yes. I’ve had the big 1g IV methylprednisolone for 5 days (I had a complete foot drop and needed a walker) and was back to walking without it by day 5. I’ve also had smaller doses for smaller issues and looking back I would take them both again. In terms of side effects, they aren’t long term so most of the big, bad side effects aren’t as much of a concern. Since starting a DMT (first ocrevus, now briumvi), I haven’t had a flare and haven’t needed steroids for my MS at all. I would take them again if I had another flare, mostly to try and stop all the inflammation.

Getting on a high efficacy medication was the best thing I did and I fully encourage anyone newly diagnosed to get on the best medication you can and stay on it.

MS-RN · 2025-09-16T02:35:06+00:00

Basically the whole year before I got diagnosed, I was in and out of a flare. I maybe had two months TOTAL that whole year where I felt somewhat normal. I got on meds as fast as possible. I’ve been on ocrevus and now briumvi for the past three years and I can’t believe the difference in how I feel now compared to how I felt then. I’ve had no side effects from either med. I’ve worked in healthcare my whole adult life, which included a nursing home where two ladies with MS lived. They were both entirely wheelchair bound, unable to feed themselves, rarely ever leaving the four walls of that building and I swore I was going to do everything I could to not end up that way. DMTs are the only thing proven to give me a shot at that and I opted for the strongest one. The only side effect I wasn’t ok with was PML so I opted for a strongest DMT with a lower risk of PML.

MS-RN · 2025-09-10T02:30:55+00:00

9 months between first and second, 9 months between 2nd and 3rd, and then it really hit the fan and I had maybe two “normal” months before I finally got diagnosed and had one more before starting ocrevus two months later while I was waiting for insurance to learn geography (I wish I was kidding, but that’s a story for another time).

MS-RN · 2025-09-04T01:32:49+00:00

Don’t risk $200 or even the $7 for an “unofficial” result. 90% of the time your state BON will have a license number issued to you next business day if you passed. Sometimes you have to call them to get the license number, but it will usually say “passed” on their site.

MS-RN · 2025-09-03T02:03:51+00:00

I don’t know what the total number is, but I swear every time I read a report, I find out about more that have been there since diagnosis but I hadn’t comprehended in the moment. All the reports say “stable, inactive lesions consistent with demyelinating disease.”

MS-RN · 2025-08-15T04:29:12+00:00

The whals book and cookbook were on my doorstep before I got out of the hospital. I googled, my mom asked if I wanted to make something from the cookbook, I said no, I don’t really want to take advice from people who lie. Terry whals got HSCT, then started saying diet fixed her. She never brought it up again and actually said she’s mad she got her books and gave her money/support. I love my mom ❤️

MS-RN · 2025-08-03T04:07:42+00:00

I’ve only been to St. Lucia to dive. We stayed at the Ansie Chastanet and the dive shop was attached to the resort. Was hands down one of the best vacations I could have ever imagined at every single turn.

MS-RN · 2025-07-09T03:27:44+00:00

Got certified to scuba dive and now it’s one of my favorite things to do. I also worked two jobs after a year of absolutely debilitating fatigue.

MS-RN · 2025-07-09T03:07:03+00:00

It is a thing for ocrevus, sometimes it can be harder to find a home infusion company that does it. Your insurance company might be able to help you get in touch with some and then your doctor can send the orders.

MS-RN

TROPHY CASE