What Mayo Clinic Told Me (Mostly: No. But the Good Kind of No.)

I spent July 28th through August 1st in Arizona and went to the Arizona Mayo Clinic. Sadly I can't say "I found the answer and now I'm healed," but I can say I learned enough to make me feel like I might know what the path forward looks a bit more like. Which overall makes it a good trip!

Genuinely. Not in the inspirational-poster way, but in the "I walked in with a list of questions, the strength of a thousand Gods, and my mother, then walked out with a full brain and a lot to process" way. Sometimes clarity means "here's your new treatment plan." This time clarity meant "here's the list of things you can stop wondering about." That's still clarity. I'll take it.

The Way I Process Things

Before I jump into what I learned, let me tell you about the energy I brought into this trip, because I think it gives shape to the way I interpret it. For the past 5 weeks I had been having flare ups (you can see more about that in my previous post ) and I was struggling mentally. My brain going down all the rabbit holes and not finding the path to the answers. Why the rabbit holes? I am trying to understand everything, the whole picture. I mentioned this before — I want to know the good, the bad, the ugly, and the 1%. All four. I don't want the sanitized version. I want to know what's likely, what's unlikely but possible, what's a dead end, and what's a waste of my time chasing.

So I made a list. A long list of questions and thoughts. I wanted to know about stem cells, hormones, bioresonance therapy, new IV protocols, CAR-T, nerve growth factor, supplements, diet theories, vitamins, birth control, vaccines, weight management, genetics — I brought all of it. If I'd heard about it, read about it, or had a 2am spiral about it, it was on the list.

What else did I bring, you might ask? My health binder! I have a whole page dedicated to what I use and what each section contains, if you're interested. I walked in armed. I had my timeline, symptoms list, all my outpatient information, my medications and dosages, all the blood work data, copies of my MRIs on CDs, and all my appointment summary information. I didn't want anything about my information to be a blocker — if they didn't get it from the doctors or hospitals, I had it in hand to show them there and then.

Back to the rabbit holes: knowing which ones not to go down is genuinely valuable to me. My OCD hates the world of what-ifs. Patience has never been my strong suit, and "the unknown" is a phrase that makes my skin crawl and my brain scream "to the web!" So walking in, I already knew this trip was going to be a mix of relief and frustration. I was right.

The Rapid-Fire "No" Round

Let's get the list out of the way, because most of it moved fast:

Stem cell treatments — no defined protocol of treatment if you go down that route for MS, nothing FDA approved, mostly for progressive MS since there aren't many other options for that population. Not relevant to me right now.

Bioresonance therapy — no information. Not "we don't recommend it." Not "the jury's out." Just: nothing.

Nerve growth factor — no solid studies that have shown progress to make it something I can look into and hope for yet.

CAR-T cell therapy — this one's getting buzz right now, and for good reason, it's promising work. But it's aimed at wiping out and rebuilding the immune system, which makes it a conversation for progressive MS, not relapsing-remitting MS. Not my lane again.

New IV therapy or a different treatment — this one surprised me. They told me to keep going on Briumvi, even with my neutropenia instance, since it didn't stay long term and about 15% of people have this issue. (I'm still processing this one, so the verdict's still out on whether I keep going and risk it.)

Hormones and MS — no need to check, since there's no link. I did ask for references on studies here, because more women get MS than men, and that feels like it could point to a connection to estrogen or something, right?

Birth control, can it affect my MS or cause symptoms? — no connection.

COVID / COVID vaccine — nothing conclusive yet either way. I have a lot of feelings about the possible connections, but I don't love that I sound like a conspiracy theorist saying so.

Turmeric / vitamins — this one surprised me. Apparently there's a real connection between turmeric supplementation and liver failure risk. File that under "things I will now stop taking with my meds."

Gabapentin — if it's not working for you, Lyrica is the next thing to try instead.

I want to be clear about something: every one of these came back "no data" or "not for you," and every single time, the response was some version of "if new research crosses our desk, we'll follow up." Not "we don't believe you." Not "stop asking." Just an honest accounting of where the science currently stands, from people who would tell me if it didn't. That distinction matters more than I expected it to.

The One Conversation That Actually Reorganized Things

Here's the part of the trip that mattered most, and it wasn't a new treatment. It was a definition.

I've been feeling notably better since a recent steroid treatment, and I went in with a real question: is this the steroids, or did it kick something loose in my Briumvi that's now working differently? The answer was straightforward — it's the steroids. Inflammation went down, I feel it. That's not the drug doing something new. That's the drug doing its job, temporarily, the way steroids do.

But then we got into the word remission, and this is the part I want to sit on, because I think a lot of people carry the wrong version of this word around without realizing it.

When most people hear "remission," they're thinking of the cancer definition — no evidence of disease, things are gone, the war is over for now. MS remission is not that. MS remission means: no new lesions, no new flare-ups, no new attacks. The goal is don't get worse. That's the win condition.

What it does not mean is that old symptoms disappear. The damage that's already been done doesn't get erased just because you've hit a stable stretch. Nerves heal slowly, if they heal at all, and there's no calendar for it. I was, essentially, told: this is not your new baseline. Give it time. Old symptoms are not part of what "remission" is measuring, and their sticking around isn't a sign that anything is going wrong — it's just what healing looks like when it's not on your schedule.

I'm not going to pretend that landed as good news in the moment. "Give your body time" is the kind of sentence that makes me want to flip a table, because time is the one thing I have the least patience for. But it reorganized how I think about this disease. I've been unconsciously measuring "am I getting better" against a cancer-shaped yardstick — is the bad thing gone yet — when the actual yardstick is "has anything new happened lately." Those are different questions, and I was asking myself the wrong one for a long time.

Clarity, even when it's not the clarity you wanted, is still clarity. I'd rather know the real shape of the thing I'm dealing with than keep measuring myself against a definition that was never mine to begin with.

Turns Out It Was the Steroids All Along

A shorter, pettier section, because I need the comic relief and so do you.

Hair loss? Steroids.

Acne, like I'm sixteen again? Steroids.

Sweating like I'm the one running the marathon instead of just standing there? Steroids.

Bruises and cuts taking forever to heal? Aspirin — which I'm taking because I also have a dissection.

Struggling to regulate body temperature going from indoors to outdoors, cold to hot? That one's an MS symptom, and there's no real relief for it — aspirin can kind of help with core temperature regulation, but mostly I'm just stuck with very ugly cooling vests, neck fans, cooling towels, hats, and praying to the gods.

None of this was MS being mysterious. Most of it was medication doing exactly what medication does, and me not having a place to file it until now.

The Practical Stuff

A few things worth writing down for future me, and for anyone reading who's navigating similar territory:

• Diet: Mediterranean over Wahls. Not "Wahls is bad," just — Mediterranean is the one with the evidence behind it for this.

• Immune-boosting vitamins: skip them. The logic is simple once you hear it — MS is already an immune system that's overactive in the wrong direction, so intentionally boosting it is working against yourself. Get what you need from food instead, and no, specific foods aren't landmines. Eat a balanced diet. Cherries and spinach are not secretly plotting against you.

• Weight management: GLP-1 medications are compatible with MS treatment, dosage isn't an issue working alongside other doctors, and diet is still the actual lever that matters most.

• Future pregnancy: Briumvi requires roughly six months of contraception after stopping before trying to conceive.

• Genetics: having a first-degree relative with MS puts inherited risk around 30%. Worth knowing, not worth losing sleep over — the guidance was to keep an eye on it, not treat it as inevitable.

• Parkinson's and Alzheimer's: no established links to MS.

  
  

Where This Leaves Me

Moving forward, I'm staying the course with my neurologist here in Utah: continuing Briumvi (maybe), following blood work to ensure neutropenia doesn't come back, and — this is the part I need to actually practice instead of just write down — tracking new symptoms and flare-ups separately from how long my old symptoms happen to be sticking around. Not lumping them together. Not panicking every time something old resurfaces.

Lastly, give my body time.

I hate that sentence. I'm writing it anyway, because it's true, and because this trip's real gift wasn't a new treatment — it was a map. Here's what's not going to help. Here's what to stop chasing. Here's the actual definition of the goal you're working toward, not the one you borrowed from a different disease entirely.

Clarity doesn't always feel like winning. But I walked out of that building with a shorter list of rabbit holes to fall into, which means my brain has fewer places to disappear to at 2am. That's not nothing. That might even be progress. My OCD is annoyed. The rest of me is calling it a win.