New RRMS diagnosis — what do you wish you’d known? Doctors, DMTs, insurance, celiac & second opinion
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! 💛