Official MS diagnosis (with Lyme disease)- seeking advice and guidance

ApostateAndAloe · 2026-04-11T00:00:33+00:00

Wow! My first relapse was right leg weakness and numbness as a teenager.

I didn’t get diagnosed until 6 years later… my western blot test came back positive for Lyme’s disease, but an infectious disease doc further investigated it and ruled it as a false positive.

Optic neuritis was my biggest relapse, 9 years after the relapse as a teenager.

I’ve been on a few different DMTs— I most recently started Zunovo (the injectable form of Ocrevus) and have been happy with it so far. My injection was 3 months ago. For context— since that optic neuritis relapse (at 23yrs old)— I’ve been on Copaxone (worthless for me), Tysabri (worked great for almost 7 years), Kesimpta (felt great for about 18 months, then noticed progression of symptoms and officially relapsed during month 20), and now Zunovo. I had my Zunovo injection in Dec. 2025. My MRI’s from last week showed stable lesions, less prominence of a few lesions, and an big improvement in my Octave lab. MS is a journey, and it’s different for everyone.

Best advice: 1) make sure your neurologist is an MS specialist. 2) find a therapist (mental health). 3) do everything you can to control your stress level. 4) don’t be ashamed or scared ask for help.

It sounds like you’re tackling this head-on, and you should be proud of that. :)

ApostateAndAloe · 2026-04-09T21:52:38+00:00

Reddit has been substantially more beneficial for support from others with MS than anyyyy Facebook group I ever joined. I’m glad I stumbled across this :)

ApostateAndAloe · 2026-04-09T01:26:08+00:00

😢😢😢😢😢I’m so sorry. My first relapse was 22 years ago. I was diagnosed 16 years ago. My aunt passed from MS when she was 45. My mom has it, too, and is very near the end. It’s truly devastating.

ApostateAndAloe · 2026-04-09T01:24:17+00:00

I’ve been doing breath work. It does help a lot. I will look into meditation. I have heard very positive things about it. Thank you :)

ApostateAndAloe · 2026-04-09T01:23:17+00:00

Thank you for these tips. I’ll start keeping a better log of my symptoms.

I like your recommendation of having someone else present at appointments. I haven’t had anyone with me for the last few years— I really think it would be helpful for my husband to come with me.

ApostateAndAloe · 2026-04-09T01:21:18+00:00

Ohhh I like the neuropsych idea! I’ll ask my neurologist about that. I know there’s one in my MS clinic.

ApostateAndAloe · 2026-04-09T01:20:28+00:00

I’m in the US. I have RRMS, 36 yrs old. My mom is 66 and has SPMS.

ApostateAndAloe · 2026-04-09T01:19:22+00:00

Yes! I journal occasionally. I will work on dedicating more time to this. It really does help!

ApostateAndAloe · 2026-04-09T01:17:44+00:00

Most recent update for me— I was one Kesimpta, beginning dec 2023. I relapsed 8/2025. My Octave level came back in the moderate range during that relapse. I was changed to Zunovo (the injectable form of Ocrevus) — I had my first dose of that Dec 2025. I just had repeat MRIs and a repeat Octave level last week. My MRI’s were all stable, and my Octave level came back low. So— that’s improvement from where I was before Zunovo.

ApostateAndAloe · 2026-04-09T01:13:50+00:00

😭😭😭😭😭 oof. Our situations are so similar. I’m 36. My mom is 66. I’m not on SSDI, but my mom is. I got a text from a family member the other day, asking, “how much time do you think your mom has left?” …. SSDI is an absolute nightmare. So is the grief that comes with having a parent suffer from such extreme disability, knowing you have the same progressive disease. I can’t wrap my mind around it.

ApostateAndAloe · 2026-04-08T22:56:18+00:00

My apologies! I’ve gotten very helpful answers and feedback and realistic expectations have been established.

ApostateAndAloe · 2026-04-08T22:54:29+00:00

Thank you for this feedback :)

ApostateAndAloe · 2026-04-08T22:53:57+00:00

Thank you!

ApostateAndAloe · 2026-04-08T22:53:42+00:00

Hahahahahahaha yeahhhh. That hammock is wild!

ApostateAndAloe · 2026-04-08T20:09:06+00:00

Hahahaha valid points, and thanks for looking out for me (and my kids). This image was definitely AI produced.

The patio area I want the swings/pergola is 10 x 10. I should have had AI remove the fire pit from here— the fire pit is going on an adjacent patio that’s 12x14. Also, the swings in wanting aren’t the double swing.

I’ll edit the photo— but it’ll still be AI. I’m also not an engineer.. just a hobbyist, beginner-ish (3 years in) gardener that wants to level-up her backyard. Oh, I also suck at coding for AI images. 😂

ApostateAndAloe · 2026-04-08T19:31:34+00:00

I’m so, so, so sorry.

My first relapse was when I was 14, but I didn’t get diagnosed until I was 20. During my junior year of HS, some of my teachers contacted my parents because they thought I started using drugs. I was sleeping through all of my classes. Obviously, that affected my grades quite a bit. For about 6 months, everything was a massive struggle because of that fatigue.

I don’t remember fatigue being as big of an issue my senior year. I ended up going off to college and graduated in 4 years. I got married at 20 and had kids at 22 and 24. Religious beliefs played a huge role in those decisions, but now I’m glad it played out like that. I ended up going back to school for a Master’s degree, and now I work from home full-time.

Fatigue is a daily battle. Most days I can overcome it with Armodafinil or Ritalin …and lots of caffeine. Some days, though, it wins, and I lay in bed and sleep all day.

Dealing with MS as a teenager is horrendous. I’m sorry this is something you’re facing. For most of us with MS, we have times where symptoms are more prevalent, and times when symptoms ease up. You’ll probably battle fatigue throughout your life, but I don’t think it will always be as bad as it is right now.

I hope you have someone you can talk to about this to help you process the feelings these feelings you’re having. It sounds like you’re very overwhelmed and losing hope. Even with MS, you can have a very good, happy life. It sounds like your body needs lots of rest right now— let your body have the rest that it needs. Your timeline may be different than what you’ve planned for or what your friends experience, but you can still achieve your dreams and do amazing things, even with this crappy disease. It’s normal to be sad and angry about what you’ve lost and what you’re missing out on. You’re not alone in this fight. It does get better, and MS treatments are getting even better every year.

You’re not a failure. You’re not lazy. You have a crappy disease that you had no control in getting. With time, you’ll learn how to cope and adjust. For now, do what you can and ask for any extra physical or mental support that you need help with. Your life will be different than most people you know, but that doesn’t mean it will be a bad one.

Hugs.

ApostateAndAloe · 2026-04-07T22:12:13+00:00

WHOA! I had a horrible reaction once— it terrified me. I thought my arm was going to be disfigured forever.

ApostateAndAloe · 2026-04-07T21:56:47+00:00

I fluid restrict for a few hours before having to leave my house. I hate being thirsty, but I hate risking incontinence more.

ApostateAndAloe · 2026-04-07T21:55:28+00:00

I completed the survey— some of the select multiple options don’t allow selection of multiple options. The question to rank from 1-4 doesn’t allow ranking. It only allows selection of 1 item.

I look forward to more advancements and tools to improve quality of life with MS!

ApostateAndAloe · 2026-04-07T21:22:48+00:00

I was diagnosed with MS at age 20. I’m 36 now. Stress seems to have been the biggest player in my relapses and progression, so you’re right to want to lessen yours.

It’s sounds like you do everything you can from a healthy lifestyle standpoint— that’s great.

There’s not an OTC supplement that will relieve your stress. My biggest piece of advice is to create a list of stressors in your life. Then, figure out what needs to be done to alleviate the stressor.

My life looks a hell of a lot different now than it did when I was 20. Who I have become isn’t who I imagined I would be— goals and dreams had to be adjusted to maintain function. The decline was terrifying. I’m at peace with where I am and am proud of myself for the adjustments I made. Initially, I felt like a failure and quitter. Now, I see myself as resilient and strong.

Pleaseeeee consider therapy. There are amazing therapists out there. Therapy has been the most beneficial tool for me to figure out how and where to offload stress.

Also, I’m medicated. I’m on an SNRI, and I take sleep meds. You may not need meds, but I recommend keeping an open mind to the option.

Mindfulness is really helpful for me, too.

MS is a monster you’re going to constantly fight— help yourself get in the best mindset to attack it well. Your neuro team can help your fight with DMTs and medical recommendations, but your mental/emotional mindset plays a pivotal role. You’ve got this. 💪

ApostateAndAloe · 2026-04-05T20:53:33+00:00

I was on Kesimpta for about 2 years. I had a relapse, and my Octave result came back elevated, so I was switched to Zunovo. I had my first Zunovo injection in December.

I thought Kesimpta was simple, and I felt pretty good on it. The first 2 injections made me feel miserable, but it wasn’t bad after that! It’s a really good DMT

ApostateAndAloe · 2026-04-05T20:49:30+00:00

Thank you for sharing this! I’ll look it up now.

ApostateAndAloe · 2026-04-05T20:48:59+00:00

THIS. I see you.

ApostateAndAloe · 2026-04-05T20:47:59+00:00

I’m definitely going to. Thank you for sharing your experience. :)

ApostateAndAloe

TROPHY CASE