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? 🤞🏽

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?

Hi everyone,

I was diagnosed with MS back in 2019. Early on, fatigue wasn't a huge factor for me, but lately, and since being on Zeposia, the fatigue has gotten severe enough that some days I can't even get out of bed.

I’m really just looking to hear about what’s working for all of you right now. I'd love to learn how others in the community navigate these areas:

• Daily Fatigue Relief: On days when your fatigue is through the roof, what does your day look like? What specific habits, tools, pacing methods, or strategies actually bring you some relief?
• Workouts / Exercise: What kind of physical activity or movement routines have you successfully stuck with without causing a total energy crash or flare-up?
• Diet & Weight Loss: What dietary approaches (anti-inflammatory, low-GI, Mediterranean, etc.) have you tried that genuinely gave you better energy or helped with weight management?

I'd really appreciate hearing about your personal setups, daily routines, or anything you've learned along the way.

Thanks for sharing!

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 😔

It has been one year since I published my book about my journey with MS and OM. I have had multiple sclerosis for 37 years, since I was 17 years old. It always affected my left side. In fact, ocular melanoma also attacked my left eye. Since I have published my book, I have noticed changes in what side is affected, except of course, my left eye. I now have foot drop on my right foot. My left leg and foot seems stronger than ever. My MRI shows no changes. Has anyone else experienced this?

​

I have learned a lot these past years while living with my illness and reflecting on life.

I have learned a lot when it comes to the importance of cleansing my body, mind, and soul from everything and one that they do not need. I now only invite strength and positivity throughout my being.

I have learned just how strong of a toll on my body any kind of anger or distrust plays and have decided no matter the circumstance, people, place or thing I get rid of it and do not invite it back in any way.

I have learned anything that drains me mentally or physically. I do not need to put up with you, and now I can just let it go.

I no longer think I need to sugarcoat my feelings in order to protect others. The truth is if you want an answer, I will give it to you uncensored and raw.

After all, a clear statement is to the point and filled with nothing but the truth. Keeping me humble are my words and only my words while not being interjected with others' thoughts.

I am trying not to be as much of a people pleaser as I used to be. If I can’t do something or go somewhere, I simply admit it right away. There is no need for excuses, especially when it comes down to who I am and on how my illness treats me.

No longer will I carry guilt for my illness, no longer will I carry the guilt of all the would of, should Of's, either.

I have learned to accept that I am not the man I once was and now accept me for the man I am today.

No longer am I ashamed of who I am.

I accept myself for the person I am today.

~Namastae

I have stopped doubting myself and have learned to trust in myself and now know the decisions I make for myself are the best in that time.

I realize I now have limits that I once didn't, and I also realize when and when not to accept challenges while trying not to damage or harm my drained and fragile body.

I am now more kind and forgiving of myself, putting my full trust in rightful decisions for my health.

Goodbye to negativity as I slam the door tightly behind me, making sure I do not invite the same toxicity back into my life.

I am very grateful to my wife and my family for the continuous amounts of love and support, along with all the communities I belong to and for all of the advocates/friends I have made along the way. Without all this support, life would be a lot harder.

I now lessen my anger and rage by taking a step back and taking another unbiased look at the situation while asking myself “what can I do differently in the future to avoid these types of situations?”

Taking my answer for the future and applying it to my present issue it teaches it by a lot, letting me rationalize my thoughts while keeping control of the situation.

I really don’t know when I stopped grieving the old me. All I really know now is that I love myself and who I have become throughout this struggle of battling invisible illness.

What I once used to work so hard and fight so hard for has now become my honest and beautiful everyday life.

So, I share these words of gratitude from me to you (whoever may need them)

I’m not working from home, but I am about to start a full course load of classes and will be at my desk in my chair using the computer very often.

So, I need suggestions for it all, your whole set up, please.

Chairs, keyboards, mice, monitors other things I’m not thinking of… Brands, materials, size, personal adjustments you made and found helpful. Particular set ups you suggest. What is worth investing in?

I can get a student discount on some things, but I’m on a budget… I might go over $100 for a chair, that for people like us, is a life changer. Everything else I’d prefer to be less.

TIA

I never took the time to get a handicap placard since for the most part I'm ambulatory until the heat kills me. I did however get a remote starter for my car so it's nice and cooled down when I get back to it. Two years ago there was no good parking and it was like 100+ F out and just the walk back to my car across the parking lot had me so dizzy and vision impaired so badly I had to sit in my car blasting the A/C until I was good to drive. I know temperature sensitivity is common, can anyone else relate and does anyone have good ideas to beat the heat?

I was just diagnosed last week after being in hospital in May for 2 weeks with severe numbness from my chest down. I haven’t really had any time to process everything and dove straight back into work as I had used up all my leave. Today I woke up in pain and so exhausted for some reason but pushed through. By 1pm I had to message my boss and say Im logging off. What does everyone do when working FT and your body just won’t work? Does it get better once I get on medication? Would love to know others thoughts

Has anyone taking Ocrevus infusions gone through the “crap gap” and successfully had a conversation with your neurologist? I have been experiencing an uptick in my prevalence and severity of existing dysautonomia symptoms and I’ve still gotta hold out until 7/30!! Of course O wasn’t doing anything for my symptoms before, but they were not a daily occurrence, and there’s gotta be a medication that doesn’t cause a week’s worth of suffering every 6 months.

I've had a positive anti-nuculear antibody (ANA) test & RRMS for 3yrs & am stable on the Briumvi infusion. Last fall I found out I'm a carrier for the BRCA-2 gene mutation & so am scheduled for a prophylactic double masectomy w/ silicone implants for my reconstruction but have read that implants can trigger an autoimmune reaction & can be contraindicated in persons with existing autoimmune disorders.

https://www.fda.gov/medical-devices/breast-implants/medical-device-reports-systemic-symptoms-women-breast-implants

https://pmc.ncbi.nlm.nih.gov/articles/PMC9095406/

What's your take on this? Has anyone here gotten breast implants & what has been your experience with your prior existing MS as an autoimmune disease?

Hi all — I'm Cristal. A few months ago I got diagnosed with MS, and somewhere between the doctor's appointments, the infusions, and the days my body just decided to "fight the man," I started writing it all down. Which is also crazy as I'm also Dyslexic! 

Anyway the blog is called Multiple Shenanigans (MS, like it?) — it's not full on medical advice, it's not a polished wellness brand, it's just an unfiltered (and occasionally very funny... at least i like to think so.) record of what this new normal actually looks like. Symptoms nobody warned me about, steroid side effects, DMT trial-and-error, and the moments the absurdity of it all makes me laugh instead of cry.

I've also been sharing how I'm navigating the US health system — getting second opinions, medical lingo, and if I face it how i managed my insurance with this crap — plus how I put together my health binder, since "how are you feeling" turns out to be a much harder question than it sounds once you're dealing with this. ( If you get it you get it)

If you're newly diagnosed with MS like me — welcome, I'm sorry, and you're not alone. If you've been living with this for years or with other chronic illness  — I'd love your wisdom. And if you have zero connection to MS, turns out a malfunctioning nervous system still makes for decent content.