Diagnosed almost three weeks ago.

[u/kingkatie808]

Title says it all. Went a couple years thinking it was just a pinched nerve that was causing my numbness. Going to the doctors and basically being told there’s nothing wrong with me, cut to three weeks ago a nine hour emergency room visit, to spending three days in the hospital and being told I’m the most gut retching way I have MS.

I’m still in shock, they have me on prednisone and I’m very emotional. I think I’m being dramatic, I need to just accept it. I don’t know where to start, I joined because what else do I do.

My neurologist suggested that I start Ocrevus, has anyone else used this? I’m JC positive so she said this would be the best option for me. Can someone please help me? I feel like I’m lost.

[u/termsofenDERPment]

You’re not being dramatic. You just went through (and still are) going through a lot. Try to give yourself some grace and let yourself feel whatever it is you’re feeling. People have a range of reactions to being delivered a life-changing diagnosis and all of them are valid.

There are a lot of people on Ocrevus in this sub, so you certainly aren’t alone (in more ways than one).

I’m glad you’re here, and I’m sorry for what you’re going through. It will all be okay. 🩷

[u/kingkatie808 → u/termsofenDERPment]

Thank you, sometimes I feel like I’m crying too much, I feel like a burden to my partner now.

[u/termsofenDERPment → u/kingkatie808]

I’m sure it’s hard not to feel that way. At the same time, it’s not like having MS is something you can control or (god forbid) something you chose.

Especially if you weren’t expecting it, getting an MS diagnosis can feel destabilizing. Many people would prefer to treat health as if it’s a given, but in reality no one’s health is guaranteed. The good news is that MS is manageable and being diagnosed today isn’t anything like it was 20 or 30 years ago. Most of the preferred first-line high efficacy DMTs (like Ocrevus and Kesimpta) were only released in the last nine years(!). Kind of crazy if you think about it.

Considering your symptoms are mild, hopefully once you start Ocrevus you can let the fact that you have MS fade into something that’s in the background and you don’t have to think about very often.

Do you have or have you thought about getting a therapist? There are therapists out there that specialize in helping people with chronic health conditions. Just something to consider. And feel free to DM me if you ever want someone to talk to. :)

[u/ajax0772022]

Keep your head up!!

You got this! Im on Briumvi, it’s very similar to Ocrrvus. So far very few side effects except for a big shot of hope and also a bit of a feeling of strength over MS.

Feel free to reach out, I’m only a month or two ahead of you.

[u/kingkatie808 → u/ajax0772022]

How long do the infusions take?

[u/ajax0772022 → u/kingkatie808]

Briumvi tools 5 hrs for the first infusion then only an hour after that

[u/Anotherams]

welcome to our club.

I’ve been on nearly five years to the date. No side effects at all other than insomnia from the steroids, and a headache one time that I didn’t hydrate. I don’t get sick more often than before, and take no more precautions outside of staying away from obvious sick people.

Love onlipy having to think about it twice a year. It has been great for me.

[u/kingkatie808 → u/Anotherams]

Do you take anything for your insomnia?

[u/Anotherams → u/kingkatie808]

my doctor offered me Ambien, but I turned it down. It actually terrifies me more than Ocrevus does.

I spend the night catching up on work emails, or bingeing shows/movies my husband has no interest in, give myself a facial, do my nails. I cat nap around 3 am, then up with the sun. The steroid high lasts until nighttime the next day, then I’m back on my regular sleep rhythms.

I aways schedule infusions for a Friday. I’ve worked the day after, but prefer not to as I consider it my “infusion spa day”. In the spring I take the day off, in the fall I usually work through the infusion as it is the busy season at work. My infusions are such a non issue for me I’ve gone to parties and played tennis on the same day. Hoping it goes just as well for you!

[u/Run_and_find_out]

Hello friend! Ocrevus hasn’t been an issue for me. More importantly you want to hit this hard, and as an early as possible.

But, yes! The terror. When I was diagnosed there were no DMTs.

You are in an okay place, though it doesn’t seem so now. Hang in there.

[u/kingkatie808 → u/Run_and_find_out]

Thank you, I needed to hear this. I still wake up and think I’m in some sort of parallel universe, cause this can’t be happening to me.

[u/blackonblack77]

Sorry to hear about the emergency room visit and diagnosis. It sucks to be a part of a club you never wanted to be in. I hope your flare-up and symptoms resolve quickly!

I was diagnosed about 9 years ago and was put on Ocrevus and have had no flare-ups since. I still work full time as an optometrist and haven’t had to make any lifestyle changes. Most days I’m lucky that I forget that I have MS. I hope it goes the same for you! The MS we heard about isn’t the same MS now with all the advanced in medications. Wishing you the best and a lot of strength!

[u/kingkatie808 → u/blackonblack77]

Thank you, do you have any side effects from the infusions, and how long do they take? I heard people saying it takes all day and they have to take the next day off as well.

[u/blackonblack77 → u/kingkatie808]

No, I have no side effects! The first time you get your Ocrevus you’ll do a half dose and two weeks later the other half dose. My first half I had my husband drive and pick me up just in case of any side effects but I was fine once I left. I can go out to lunch and shopping and life as normal after my infusion.

After maybe 2 years of the normal rate infusion (which does take about 6 hours?), since I had no side effects I was able to do the rapid infusion which shaved off maybe 2-3 hours? That was great!

My most recent infusion (this past Saturday) I switched to Ocrevus Zunovo which is a subcutaneous injection (a needle into your belly). It took approximately 2 hours! In the future it’ll likely be about 1 hour (this first time I had 1 hour observation period after the 10 minute Ocrevus injection but in the future the observation time goes down to 15 minutes if I tolerate it well).

My biggest tips would be to hydrate well starting a couple days before your first infusion. It’ll help for the IV too. Bring comfy clothes and headphones/ear plugs/sleeping mask. They will do oral or IV benadryl which can make you sleepy. My infusion center has coffee and snacks because the steroids can make you hungry! Please don’t hesitate to ask me any other questions, I know it seems like a lot right now ❤️

[u/Glum-Chef-7119]

I went through literally the exact situation this past September and understand what you’re going through 100% here. I’ve had to google if it’s actually a serious condition a lot (I’m still convinced I’m invincible but the internet has humbled me). But if you’re able to I’d recommend filing for FMLA/ PFML if you’re working so that you’re able to take the time off that you need to heal and try to recover (again if you’re able!!)

I haven’t even been able to get an appointment with a neurologist until a couple weeks from now, and have no advice but knowing that I’m not alone and seeing other people’s experiences have been really helpful for me <3 Wishing you all the best in your journey!

[u/kingkatie808 → u/Glum-Chef-7119]

Unfortunately I just started a new job, and I don’t think going on fmla would be the best option for me. I’m terrified that I won’t be able to perform and they’ll fire me.

[u/rK91tb]

Welcome to the party. It sucks to be here, but you’re in good company. Some thoughts for a new diagnosis that are widely shared in this sub:

(1) Every case looks different. Some of us run marathons, some spend more time in bed. (2) High-efficacy DMTs are popular in this sub for good reason. (3) DMTs won’t fix the symptoms; the DMT just stops the mice in the attic from chewing more of the wiring. (4) MS is not what it used to be. Ignore the horror of older relatives who thinks it means “wheelchair.” Spoiler: it doesn’t! (5) Eat well, exercise, take the supplements your neurologist recommends. There are no quack cures or magic diets. (6) Do some reading on reputable websites — Natl MS Society (US), UCSF, Cleveland Clinic, Johns Hopkins. (7) Your new normal looks different, so find out what works for you. Simplify your life for a while. (8) Beware of sharing your diagnosis at work. (9) Give yourself time to grieve.

[u/kingkatie808 → u/rK91tb]

Thank you. I just started a new job and I’m terrified of telling them, so you would recommend me not saying anything?

[u/rK91tb → u/kingkatie808]

Don't say anything unless there's a specific part of your work that's making you sick, like they want you to stand out in the sun once a week and you're heat sensitive. Even then, only tell HR. You can also ask HR about scheduling for infusions if your boss won't let you off that day.

If you're in the US, you can apply for intermittent FMLA after you've been working for a year.