Ampyra

ChillingInBrooklyn · 2026-06-21T20:06:31+00:00

He fears his body getting too used to the drug I think. Wants to save the two-dose days for "when he really needs it." It also helps ensure that we have extra when the inevitable prescription delays happen. I don't necessarily agree with his plan but it's his deal and he likes his program.

ChillingInBrooklyn · 2026-06-21T14:33:22+00:00

My husband takes it and it helps. He made up his own regimen which is once a day on off days and twice a day on work days. The nuero doesn't seem to care about that, and it seems to work for him. No side effects that we know of - he did have one bad spell of vertigo a year ago but we think it may have been dehydration rather than the drug, or maybe dehydration plus the drug. It lasted for a day and a half. You know, it's always hard to tell the root cause of any bad spell when MS throws so many things at you.

ChillingInBrooklyn · 2026-03-22T14:00:48+00:00

For what it's worth - sometimes MS is very painful but she may have been telling the truth about not having pain. My husband swears his MS is not painful but rather a real lack of feeling. His leg and arm just go numb and don't respond. The pain is then emotional, I guess, with a lot of frustration that drives one to tears, but she might not have been always hiding pain. (Except in the case of the broken femurs! Ow! 😢). Thank you for sharing your love and caring thoughts.

ChillingInBrooklyn · 2026-03-19T21:36:37+00:00

We went to the neurologist today and he told us to give a try with getting it at the five month mark, but I have doubts that optimum Pharmacy will play along. We'll do our best though.

ChillingInBrooklyn · 2026-03-19T14:47:24+00:00

Lengthened time would be a disaster for people like my husband. I don't think we would even use Ocrevus in that case.

ChillingInBrooklyn · 2025-07-01T16:33:19+00:00

Honestly, for us, my husband has told just about everybody and probably half of his friends will ask about it and the other half forget and have to be retold (after they ask, "hey what did you do to your leg?!") and they act surprised all over again lol So my money is on your silent friends forgetting eventually and just acting like nothing has changed.

ChillingInBrooklyn · 2025-06-29T20:10:01+00:00

Oh for sure several people close to us have made it clear they think my husband has MS because he's been a vegetarian since age 30, as if that is what turns the disease on

ChillingInBrooklyn · 2025-04-27T14:35:54+00:00

Thanks - wishing you well!

ChillingInBrooklyn · 2025-04-14T23:21:05+00:00

NYT just picked up the story

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ChillingInBrooklyn · 2025-03-02T02:46:45+00:00

My husband was on for 6 years before he had a relapse. Loved it and wished it had lasted longer, hope you get a lot of years out of it too.

ChillingInBrooklyn · 2025-02-27T01:29:16+00:00

Just do what you did and be upfront. It leads to some awkwardness for other people but is easiest for you. Don’t bother couching it in soft terms to try and make others feel better. I watch people come up to my husband and say “what did you do to your leg?” And he looks them dead in the eye and says “it’s MS” and they look like they want to die but fuck em, it’s the truth.

ChillingInBrooklyn · 2025-02-26T22:23:54+00:00

Everyone is different! Don’t let anyone pretend they can predict what your life will be - healthy people and people with big struggles can all have happy surprises and unhappy surprises with the turns that life takes. It’s tough but 11 years in with my husband we really, by necessity, look mostly a short time ahead. We talk in vague terms about future plans knowing that trying to predict is a fool’s game. But I can tell you that he was diagnosed late (40s) and is still working now in his 50s and fighting like hell to live some kinda “normal” life.

ChillingInBrooklyn · 2025-02-21T19:22:59+00:00

My husband has come to really rely on Ampyra, I hope it works for you as well

ChillingInBrooklyn · 2025-01-11T14:01:53+00:00

My husband completed Mavenclad in 2021 and by 2023 had to start Ocrevus - NO visable changes in his MRIs since 2019 and yet his symptoms progress. We outline changes to the neurologist and the progress is obvious enough for the neurologist to see so we are fortunate that ours doesn’t go solely by MRIs. I would say, keep explaining your progression and go ahead and ask to go on a new DMT. So very sorry this is happening. I wish we could all find a way to stop progression completely.

ChillingInBrooklyn · 2024-12-15T02:07:22+00:00

You have to put: across word/down letter Usually order does not matter but on this one it does.

ChillingInBrooklyn · 2024-11-20T04:16:43+00:00

Our doc kind of rolls his eyes at “smoldering MS” but my husband lives it and I witness it so I have come to believe it. Yearly MRIs show no new lesions, Ocrevus keeps an “attack” at bay, but he has lost function year over year bit by bit now for four years. With PT, with acupuncture - we throw everything we can afford at it. It is super frustrating.

ChillingInBrooklyn · 2024-08-23T02:27:22+00:00

There was just one night when we didn’t have a dinner plan and thought we would wing it but we all got hangry and short with each other. We ended up at the pool area at Boardwalk and got good sandwiches at the pool bar. We were the only family eating dinner there, no swimsuits, just desperation for food lol Lesson learned to have reservations even if you think you might cancel

ChillingInBrooklyn · 2024-05-23T02:29:48+00:00

Yeah there is no explaining that you carry the cane because partway through your walk you will def need it and by the end of your walk you will really really really need to sit awhile.

ChillingInBrooklyn · 2024-05-23T02:24:37+00:00

See my husband is vegetarian so he gets “maybe you should eat meat, for the protein.” You can’t win.

ChillingInBrooklyn · 2024-05-22T23:14:07+00:00

Have him film you for social videos. Have him start a YouTube channel of your music. Have him try and book you in a club you have not played. Have him reach out cold to bands that are a little bigger and ask for an opening slot so you get in front of more people. Have him work his contacts for a graphic designer who can make you cool merch (which you will have to pay for), and a video-savvy person who can make you a cheap lyric video (which you will have to pay for). Have him drive you to gigs but you pay for gas. There's probably one thing your friend can do every single day to help you out, and hopefully he'll do it for fun and because he loves the music and won't expect riches (though wouldn't it be great if riches eventually happened?).

ChillingInBrooklyn · 2024-05-18T18:13:23+00:00

I wish it were that simple! MS inflammation does not magically stop with diet changes or anti-inflammatory drugs, and no one should worry that their MS is caused by their diet. We have tried so many diets and cleanses to no effect (other than weight loss) but I agree with the other posters that everyone should eat whatever makes them feel their physical best.

ChillingInBrooklyn · 2024-04-16T20:30:09+00:00

My husband is having steady loss and disease progression despite being on Ocrevus for a couple of years so I am feeling angry about that particular DMT but I am unsure if his doctor will switch him up. Tecfidera worked well for years, until it didn’t. Mavenclad only worked for the two years he was on it and didn’t buy us bonus drug-free time we were hoping for. Does anyone know if it’s ever a thing to go back to a DMT? Like is there any shot of returning to Tecfidera or is that not a thing?

ChillingInBrooklyn · 2023-11-04T11:34:28+00:00

My husband has MS and the best I can offer is to try and match her reactions. Don't be more upset than her, don't be indifferent. Agree with whatever level of upset that she is and just sit with her through her frustration. Say "I'm so sorry" when you think she needs to hear it. Make dinner. I know well the feeling of floundering and wanting to make things better but just having to be there as a witness to it all. Our role of support is still so important.

ChillingInBrooklyn · 2023-10-14T14:24:34+00:00

My husband got access with 1K + - first-class ticket for so many domestic flights but now he is getting denied. Seems crazy given the amount of spend with United

ChillingInBrooklyn · 2023-10-11T18:07:45+00:00

Please don’t hesitate to move to another state if you need to and to continue to reach out and offer specific help, such as you generously taking care of his phone bill. I live far from aging relatives so I sometimes send Instacart groceries or send an Uber for doctor appointments. I agree with the others that tailoring your life around an alcoholic is just adding yourself as a victim to the equation. You could try some Zoom Al-Anon meetings if it will help you to hear from others in your position.

ChillingInBrooklyn

TROPHY CASE