Newbie here!

[Jer29-11]

Hello! I’m new here (and new to MS!). I was diagnosed with RRMS in October 2019, so very new! Also, I’m a fairly new mom, I have a 2 year old little girl. I’m trying to figure it all out, but so glad I found this resource for questions/support. I started treatment with Rituximab and had a horrible reaction. My dr switched me to ofatumumab infusions, which I know is a pretty new medication. So far, I’m doing well, was able to return back to work a few months after my diagnosis (nurse). I’m just a bit scared for the future! It’s so hard not having any idea how this disease will progress and affect my life. Trying to stay hopeful and positive 😊. Love and joy to all!

[Sandydemop]

Hi Jer29-11 welcome to a safe place to talk about ms with people who get it. I don’t have any answers for you or me about the future but I try to stay in the present. The only thing I would recommend not that you asked is to exercise as if your life depends on it.

[Jer29-11 in reply to Sandydemop]

Thanks! I’m actually a (former) athlete. I played competitive sports growing up and as an adult, l became a triathlete, cyclist and recently, crossfit. My body just can’t get back to what I used to do after my first relapse which lead to my recent diagnosis. I know how important exercise is so I started doing yoga every morning and that has been so good! Thanks for the advice, I totally agree!

[greaterexp]

Welcome! By taking an effective DMT, you are doing a great deal to prevent relapses and delay progression. Way to go! We don’t get any guarantees, but then, we don’t with any area of life.

Remember that my MS is not your MS. Come and vent here any time. We’re all in this together.

[kycmary]

Welcome & everyone is different, every day is different & sometimes every hour is different. Good luck with all that you do & congrats on being a new mother!

[mm1527mm]

Sorry you are here but glad you found the group! Im a fairly new mom as well 2 and 3 year old. Diagnosed july 2019. Scared of future as well. One day at a time. Blessings

[RoyceNewton]

G'day, nice to meet you, ask questions I am sure you will get answers. Start a Disease-Modifying Therapy (DMT) yesterday. I love Tecfidera which is an older tablet, best bet might be Ocrevus which is a twice yearly infusion Good luck with everything.

[Royjr]

Welcome and being a nurse you know how important of taking charge of your health and obtaining all the knowledge you can about this disease. You know MS effects everyone differently and the DMT isn’t a cure. Ask questions, take your medication, eat right, perform moderate exercise and enjoy your little girl. Don’t be afraid to vent your fears or frustrations here. I think everyone here knows what you’re experiencing.

[jimeka]

Hi Jer29-11 are you part of the trial for ofatumubab, as I didn’t think it had been passed for ms yet? Let us know how you get on and if it works well on relapses please. Thank you Blessings Jimeka 🦋

[Jer29-11 in reply to jimeka]

No, it’s not a trial. It isn’t approved for MS yet. It’s an off label use for MS like Rituximab. I’ve only had one infusion and didn’t get a full dose because I had a reaction to it, although not as severe as Rituximab. We’ll see!

[jimeka in reply to Jer29-11]

Sorry that you are having reactions to the infusions, maybe a tablet form like Mavenclad May suit you better?

[CynthiaS]

Welcome home Jer29-11!! Try not to worry. Sounds like you are doing well with returning to work. Congratulations having a baby girl. Blessings Cynthia

[goatgal]

You are doing everything positive for your continued well-being: an effective DMT, exercise/yoga, nursing (which keeps your brain active professionally)and loving your daughter. Although you don't mention healthy eating, I'm sure you practice that as well. As others say so clearly, each one of us is affected by MS in different ways, so the only advice I can offer is this: enjoy your daughter, savor each day, and don't borrow trouble by wondering what course your MS might take in the future,

[Jer29-11 in reply to goatgal]

Thank you, and yes I’ve always been a relatively healthy eater, but I’m really watching my diet now. No gluten, dairy or sugar.

[ahrogers]

Wellcome! We have other nurses in this group including myself and kdali who also has little ones and may be a better resource on how to juggle it all as my son was a teenager when I was diagnosed. My best advice is to not dwell on the activities you are no longer able to do and do the ones you can to the fullest. I let that get me down and exercised a lot less than I should have and regret it now as I have lost more abilities by not doing what I could.

I am just curious why your neuro chose Rituxan over Ocrevus? Ocrevus is a humanized version of Rituxan so has less reaction. Maybe an insurance issue. I was lucky enough to start Ocrevus on a clinical trial so haven't had an issue with insurance covering it now.

Good luck and keep up the yoga! If needed see a PT to see about improving function.

[Jer29-11 in reply to ahrogers]

Thanks! I’m not too sure, but I’m guessing it’s insurance related. His back up was ofatumumab, which is also fully human derived. I know if I need or want another medication I can push to get it, but I’ll see how this one goes. I’m feeling pretty good, but it took about a month after the infusion to feel “normal.” Same with the Rituximab

[IFwczs]

Welcome to the group!

I used to tell all the newcomers about Ann Boroch's book "Healing Multiple Sclerosis." But now I just say (especially since you have a 2-year old): watch what you eat, be aware of the anti-inflammatory diet - no dairy, gluten, sugar, peanuts and oranges. Avoid GMO.

[kdali]

Welcome! I’m excited to hear more about your new med!! I have 2 girls under age 3 and have retired from nursing. I hope you find what you need here! Mindset makes a huge difference, IMO.

[Jer29-11 in reply to kdali]

Thanks! I completely agree about mindset! I’ll definitely be asking you questions! Seems like we’re in similar life situations. All the best to you 😊

[DIsneyQueen]

Hi Jer29-11, Sounds as if you are pretty stable at the moment. Congrats on going back to work. And thanks for the care you give as a nurse. And congrats on your most important role as the mom of a 2 year old. Yes, this diagnosis can be scary and overwhelming but be assured that you are safely in Gods arms. He has a plan for you, a plan to prosper you and not to harm you. I believe if He takes you to it, He will take you through it. 🙏🙏😇

[CynthiaS in reply to DIsneyQueen]

🙏 Amen

[Tazmanian]

Congratulations on joining the group

[hairbrain4]

Welcome! Glad you found us but sorry you had too! This is a great group of people from all walks of life in differnt stages of MS and on differnt meds. I was diagnosed in 2005. I would suggest that you research as much as you can about MS. As they say "Knowledge is Power" The more you know about MS the better equipped you are to deal with some of the things that may come up. Don't judge your MS with anyone else as we are all different people, so our MS is different. Unfortunately MS is a progressive disease so it is important to find a DMT (Disease Modifying Therapy) that works for you and stick with it. Take notes of how you are doing to take with you to your neuro visits. Sometimes even the littlest thing might be something that the dr needs to know for the overall picture. Being a nurse I'm sure you understand that. And in the midst of taking care of everyone else, don't forget to take care of yourself.

[BLB1]

Thinking of you! ❤ The unknown can be scary.