r/MultipleSclerosisLife

Hey! I need some advice on where I should inject my Kesimpta pen so it hurts less.

I guess I'm a wimp because this crap hurts.

Tried both right and left legs. I tried the back of my left arm.

Any suggestions? Please

I'm starting to hesitate more and more...

I'm a newbie. Will my spot just toughen up? 🤞🏽

Guess this confirms it...

Newly separated mother of an 8 year old daughter, just started 3rd grade.

I have an excellent support system, and even though it comes with strings, I know I am incredibly lucky to have it.

Still - the days are long for an 8 year old in a small apartment and where we live it is hot and it’s going to be hot for a lot longer. She has the energy of the sun and while I try, it will never be enough. It is made more frustrating by the fact that she doesn’t really understand MS and I do not look sick. She knows I have it but, let’s be real, it’s challenging to explain this disease to an adult.

“Mom looks like mom, why can’t she do anything anyone else does?”

What do y’all do? Do you divide up your time strategically? Are there low-energy activities you can both enjoy? I still try and limit it but somedays the screen is the babysitter, and anyone who wants to judge can come throw hands with a handicap.

I don’t know, it makes me feel so unbelievably guilty and sad, I hate it. I really do.

The separation, her little cousin just moved out of state, new school year… if anything this is when a parent would want to be pulling out all the stops, 110% for their kid… and we can barely be 100% for ourselves.

How do you parent your best with MS and not let the guilt drown you?

Anyone in the Southeast LA / Los Angeles area living with MS? I’d love to make some new MS friends, preferably around my age (30s)! ✨

I’m into Pilates, coffee dates ☕️, nature walks 🌿, and just getting out and enjoying life. It would be so nice to connect with people who can relate and maybe make some new friendships along the way🙂

Cross-posting this in multiple groups.

TL;DR: Partner newly diagnosed with RRMS. Looking for Maryland-specific experiences with MS neurologists/practices (especially Johns Hopkins), second opinions, and insurance, plus experiences from anywhere with Briumvi/other DMTs, celiac/GI issues + MS, and anything you wish you’d known or asked when newly diagnosed.

Hi everyone! My partner was very recently diagnosed with relapsing-remitting MS (RRMS), and I’m helping research options and experiences. I’d really appreciate any insight about doctors, treatments, insurance, and navigating a new diagnosis. (For doctors, practices, and insurance, I’m specifically looking for Maryland-based experiences; for everything else, experiences from anywhere are absolutely welcome if they might be helpful!)

🏥 Maryland neurologists / MS specialists

Who do you see, and would you recommend them? We’re especially interested in Johns Hopkins, but open to MS specialists anywhere in Maryland.

Are there any neurologists or practices you’ve had bad experiences with or would avoid? Why?

Has anyone switched from a private neurology practice to a larger MS center? Was the care noticeably different?

How involved is your actual neurologist versus an NP/PA? Do you feel like you get clear, direct answers to your questions?

🩺 Second opinions

Did you get a second opinion after your initial diagnosis? Where did you go, and did it confirm your diagnosis and treatment plan or change anything?

Has anyone specifically gone to Johns Hopkins for an MS second opinion? What was your experience?

💉 Briumvi / other MS treatments

Has anyone used Briumvi? What was your experience—good, bad, or uneventful?

What DMT are you on now, and what have you tried previously? Why was that treatment chosen, and if you switched, what prompted the change?

How did your doctor determine which DMT was the best fit for you?

Has anyone felt like a particular practice strongly favored certain medications? If so, did you seek another opinion?

💳 Insurance

Have you had problems getting MS specialists, MRIs, testing, medications, or infusions covered in Maryland?

If something was initially denied, what ultimately got it approved? Did specific documentation or wording/phrasing from your doctor help?

Any patient-assistance programs, insurance workarounds, or tips you wish you’d known about?

🌾 MS + Celiac / GI issues / anemia

Does anyone here have experience managing MS alongside celiac disease, anemia, and/or significant GI issues?

Have these affected MS symptoms, fatigue, nutrient levels, medication tolerance, or which DMTs were appropriate?

Do your neurologist and gastroenterologist coordinate your care?

And finally: what do you wish you’d known when you were first diagnosed, or what questions do you wish you’d asked sooner?

We’re not looking for medical advice—just experiences, recommendations, things to watch for, and questions worth asking. This is all very new, and we want to make informed decisions and build a care team we feel confident in.

Thanks for anything you’re willing to share! 💛

I know this feeling... It's exhausting 😔