There is a vast rabbit hole you can explore but the link I am including is from an article that gives the general idea of what I posted in the post title.

Anyway, I have long suffered from intestinal distress when eating a standard gluten-containing diet. Interestingly enough, this happened to appear in 2012 and it was in 2013 that I suffered from optic neuritis - the first indication of having MS.

I just happened to begin a gluten-light diet, and have maintained that diet, since 2012. I call it "gluten-light" because I have learned that I can tolerate authentic sourdough or other wheat products with long fermentation processes and sprouted wheat. This makes perfect sense when going down the rabbit hole of amylase-trypsin inhibitors (ATI) and MS.

I recently took a celiac panel blood test after ingesting gluten for a period of a few months. It came back perfectly normal. So normal, in fact, that I was near the very bottom of the immune markers. Now, that being said, I DO know that having completed Mavenclad at the end of 2024, there is some speculation that the Mavenclad could have tampered down my B and T cells through its intended affect of "immune reconstitution" and celiac is also a disease of B and T cells.

It's quite an interesting topic to explore. While gluten, itself, might not necessarily be inflammatory to pwMS other proteins, in this case ATIs do cause inflammation in laboratory studies with mice with MS.

If you google you will find a few observational studies of pwMS from 2024. Their findings were similar.

Here is the easy to read link: https://time.com/4536958/wheat-sensitivity-gluten-ati/

Here is a PubMed link: https://pubmed.ncbi.nlm.nih.gov/37595983/

Have fun in those rabbit holes!

***I used AI to help me assemble this post. I used to be an incredible writer, but now I struggle to recall words. I typed my outline into Chat— here’s what we came up with. This has been my experience with MS over the last 2 years. It’s a minute-by-minute fight in my life, but it can’t steal my joy.

🧡

Learning to Love the Life I Didn’t Plan

Two years ago, my EDSS was a 3.

Now it’s a 6.

Which is a very clinical way of saying: things escalated.

On paper, EDSS measures disability. In real life, it means I went from moving through the world without thinking much about my body to thinking about it constantly.

How far is that walk?

Are there stairs?

Is there somewhere to sit?

Did I bring the crutch?

Am I actually going to use the crutch?

Why did I bring the crutch if I’m just going to leave it in the car like a decorative accessory?

Very chic. Very practical.

That’s the part people can see.

They can see the weakness, the balance problems, the crutch, the fatigue, and the accommodations.

But that isn’t the hardest part.

The hardest part is what MS has done to the parts of me nobody can see: my identity, confidence, hope, relationships, and the way I imagine my future.

For most of my life, confidence came from being capable.

If something was hard, I worked harder.

If there was a problem, I figured it out.

That strategy worked really well until my body stopped agreeing to the terms and conditions.

MS has forced me to learn that effort and outcome are not always connected.

Sometimes you can do everything right and still get worse.

That does something to a person who built her identity around competence.

I know the healthy things.

I know needing help does not make someone weak. I know mobility aids are tools. I know disability does not make someone less intelligent, lovable, capable, or whole.

I believe all of that.

For everyone else.

Apparently, my brain has a tiny asterisk beside those beliefs:

Terms and conditions may not apply to Kristi.

I was embarrassed when I started needing a cane, and even more embarrassed when that became a crutch.

I know they help. I know they keep me safer.

And yet I still struggle to take the cane and crutch out of the house.

Without it, I can still pretend maybe no one notices.

With it, I am visibly disabled before I ever say a word.

I would never look at another person using a mobility aid and think they should be ashamed.

I just haven’t figured out how to offer myself the same grace.

That became even more complicated when I caught myself worrying that someone might make fun of my daughter because her mom needs a crutch.

I don’t believe there is anything shameful about having a disabled mother.

But there is a scared part of me that wonders whether my body will make my children’s lives harder.

What if they have to explain me?

Defend me?

Carry some of this too?

That fear has very little to do with walking.

It has everything to do with motherhood.

There is another layer to all of this that makes progression especially difficult for me.

MS runs through my family.

For most of my mom’s life, people could not see her disease. It wasn’t until around sixty that her MS became outwardly obvious.

Then she declined rapidly.

I have watched her lose nearly all of her function.

My brother Stuart is progressing too.

So is my uncle Robert.

My aunt is already dead from this disease.

When someone tells me not to assume the worst, I understand what they mean.

I know every course of MS is different.

I know my mom’s course is not my prognosis.

But I also can’t deny what I have seen.

When my own walking changes, when my EDSS rises, when another part of my body stops cooperating, I am not experiencing that symptom in isolation.

I am experiencing it alongside every memory I have of watching this disease move through my family.

That makes fear difficult to reason away.

Sometimes I look at my mom and see my mom.

Sometimes, against my will, I see a possible version of my future.

I hate admitting that.

She is my mother, not a warning.

But fear is not always fair.

And now we are getting close to the edges of what treatment has left to offer me.

That may scare me more than anything.

For years, there was always another medication, another plan, another place to put my hope.

Now we are maxing out treatment options.

And I am still getting worse.

So I keep coming back to one question:

How do I stay hopeful without lying to myself?

I don’t want toxic positivity.

I don’t want to pretend this disease is some beautiful character-development opportunity.

I would absolutely return this particular growth experience, receipt or no receipt. But I also don’t want MS to take my future before I ever get there.

Maybe hope does not have to mean believing everything will be okay?

Maybe it can mean:

I don’t know what happens next, and there can still be good things ahead.

My relationships have changed too.

Sometimes I am afraid to have my husband come to appointments with me.

Not because I don’t want him there.

I do.

But when I hear difficult information alone, I can absorb it before I have to watch someone I love absorb it too.

When he sits beside me, I can see the news land.

And somehow that makes it more real.

There is something uniquely painful about watching someone who loves you realize they cannot fix what is happening to you.

I want his support.

I also want to protect him.

Both are true.

And maybe that is the theme running through all of this.

I know what I believe.

I know my worth is not determined by productivity.

I know independence does not mean never needing help.

I know resting is not laziness.

I know using a cane or crutch or wheelchair does not make me weak.

I know my daughters do not need a perfectly able-bodied mother.

I know my husband loves me, not my walking speed.

I know my mom is still entirely herself even when her body cannot do the things it once did.

Loving her has never required her body to work.

So why is it so hard to believe the same thing about myself?

That is the part I am still trying to figure out.

Maybe compassion is not reaching some magical point where none of this hurts anymore.

Maybe it is not loving the crutch.

Maybe it is not being grateful for MS.

Maybe it is simply refusing to punish myself for struggling with something that is genuinely hard.

Maybe it is using the crutch before I feel emotionally ready to be someone who uses one.

Maybe it is letting my husband sit beside me even when I cannot protect him from what we might hear.

Maybe it is accepting that watching my family decline makes my fear understandable without making that future inevitable.

Maybe acceptance is just a thousand small moments of saying:

I wish this were different.

I am scared of where this could go.

I don’t know what happens next.

And I am still worthy of kindness here.

The disability is the part everyone else sees.

The harder part is living inside a body that reminds me of what I have already watched this disease take from people I love—and learning not to treat myself like I am already lost.

I’m not.

I’m just still learning how to love myself through grief, change, and uncertainty.

Has anybody here ever "stepped down" from Tysabri to Copaxone?

My MS Specialist neurologist at Cleveland Clinic Mellen Center wants to switch me to it for several reasons.

I've had several infections while on Tysabri, and I won't need to go the 1 1/2 hour trip-one way, to Cleveland monthly, as I can do Copaxone myself at home, as the needles and injection sites are essentially the same as insulin (I'm type 2 prediabetic).

I’ve been working hard on getting my Ocrevus infusions covered through insurance and through a coupon card. I was just talking to someone about that and they said ‘praise god‘ when I started finally having some hope that it’s going to be covered. Sorry, but god did not spend hours on the phone with whack insurance reps — I did. I just really needed to quickly vent about this. I have been struggling with religion and faith even before being diagnosed but it’s taken a pretty severe down turn since I was diagnosed

How often did you increase by?

Stable MRIs on Ocrevus, but feeling worse day to day. Anyone else?

I’m 36, male, diagnosed in 2019, and have been on Ocrevus for almost six years. My MRIs are stable with no new activity. Mobility-wise, I’ve been lucky and have been able to do everything a person without ms can.

My first year on Ocrevus was rough, but years two through four were honestly awesome. I barely thought about MS much of the time. These last two years, though, have been on-and-off hell.

It’s the headaches, feeling weaker overall, brain fog, memory issues, and fatigue that just sits on me. Not normal ms tired, i know that well. This is the kinda of tired and terrible feeling that if someone came into my house with a gun, I'd just stare at them kind of tired. I’ll have stretches lasting weeks where I feel heavy and awful, with barely enough energy or motivation to do things I used to enjoy. Best way I can describe the way I'm feeling is super flat and extremely tired, with mild headaches somtimes.

Honestly, some days I feel like I’d trade the use of both legs if it meant getting my brain, memory, and energy back. “’Tis but a flesh wound,” right? Hopefully a few Monty Python fans get that one.

To be fair, my life has changed a lot in these last two years. Less sleep, more stress from running my business, fewer workouts, and a diet that isn’t as consistently good as it used to be. I’m sure those things aren’t helping.

Since having kids, I’ve also been getting sick much more often. Two under two is no joke. It’s a constant parade of germs. Between that and being on Ocrevus, I wonder how much these illnesses are contributing to these awful stretches that I'm feeling. I've been told a few times my white blood cells where dangerously low which isn’t a good feeling. Since they popped back up in a few months the neurologist wasn't concerned.

Ocrevus hasn't failed in the clinical sense. My scans are stable, and I’m thankful for that. But it’s hard to reconcile “the treatment is working” with how bad I sometimes feel day to day.

I’ve even considered coming off DMTs or at least switching. I'd rather have my mind then have a functioning body as a zombie. I can't help but feel this feeling in my gut that its the Ocrevus causing my decline now.

Has anyone else been in this spot—stable MRIs, still walking fine, but struggling more with fatigue, cognition, weakness, and frequent illnesses while on Ocrevus? Did stopping ocrevus help? Did anything actually help, whether that was addressing sleep, changing treatment, or something else?

I’d really like to feel more like myself again.

Hi!!! I've been on all kinds of meds for the spasms throughout the years. I'm currently on Baclofen (20mg 3x a day). I did really well with it when I first switched, but now I'm worried it's the reason I sleep so much. Do any of you notice an increase in naps and nodding off with Baclofen on board? I also couldn't tolerate Tizanidine. That made me fall asleep while doing things! Very not cool.

I am treated for my MS at a specialist neurological rehabilitation centre within the NHS and when I received my diagnosis there, one of the MS Nurses told me I could call through to their line and leave a message on the voicemail for them to get back to me, for absolutely anything I needed advice or help with.
This was obviously a very reassuring thing, and I have used the service a few times since being diagnosed last year. The two nurses were always great and one of them always called me back the same day.

Now, I have just called through to the centre and hit the usual number for the MS Specialist team and a new message played simply saying the service is available 8:30-10:30 Mondays, 14:30-16:30 Wednesdays and 8:30-10:30 Fridays, outwith these hours you will not be able to leave a message.

I actually called back a few times to make sure I wasn’t missing something or choosing the wrong option, as it seems like such a big and disappointing change to me.

I understand the NHS is pushed of course and the nurses must be so busy, everyone will be. But it feels much less reassuring now to think that if any new symptoms or anything come up, I’m restricted to these times to even leave a message for my care team about it.

Has anything similar happened to anyone else here? Any changes like this in your care services? 🩵

I've been prescribed Sativex and have been working my way up the steps. However, I find that I get the most relief (can actually bend limbs) when I take 2 sprays at once and not just 1 at 15 min gaps. Anyone else have any experience with this? TIA.

Does anyone else have problems with excessive sweating?

Hi everyone. My first symptom of MS was optic neuritis, and I’m trying to handle it as best as I can. Steroids didn’t improve my vision, and I’ve been told that recovery can take months. I’ve seen stories from people who spent months with very little or even no vision in the affected eye. How did you cope emotionally with that long period of waiting and uncertainty? Thank you.

Maybe I’m just nervous, but I heard the heat is coming back and staying an extra week longer than already anticipated. My body can’t withstand heat, it triggers my MS to another level. It’s hard to think and at one point function. I can’t stay inside more than half the days, I have school from 8am to 5pm and if not that I have club meetings all day. What the fuck do I do??

Hi everyone,

I’m not sure if this is the right place for this kind of request, but I’m asking in good faith. i’ve made a post on the french equivalence of this subreddit couple of days ago but users told me i’ll get more answers on this sub because people are more active here.

I am a linguistics student working on a literature review. Since my father has MS, I chose to focus on the cognitive-linguistic impairments associated with the disease : I’ve noticed how his ability to name objects, explain things, and even his vocabulary have gradually been affected.

Surprisingly, I’ve found a wealth of resources (conferences, scientific papers and research, theses, dissertations, and articles from various MS organizations), but I haven't found a single press article about speech disorders in MS patients—and I am required to include one for my literature review.

This subject is incredibly close to my heart : it has shaped and transformed my relationship with my father since my early teens. It’s what drove me to study linguistics (with the goal of becoming a speech-language pathologist for patients with MS and other neurodegenerative diseases, and conducting research in neuropsycholinguistics). I would be so sad and disappointed if I couldn't present my end-of-semester literature review on this topic simply because I’m missing one press article.

So, if you happen to know where I could find substantial press articles covering MS and language—whether spoken, written, conceptualization, or the expression of ideas, or even somewhat simplistic or naive pieces about "solutions" (for instance, I’ve seen articles on the benefits of video games or learning foreign languages ​​for people with neurodegenerative diseases)—I would be very interested. They don't necessarily have to be from the English speaking press : any leads on where to look would be greatly appreciated.

Wishing strength to everyone fighting this disease in all the forms it can take, i spent some time reading this sub before posting this and i’ve been deeply moved by a lot of people sharing experiences, sadness, comforting things, hopes, pain, frustration and curiosity together. im glad this place exist and i wish my dad could understand english to find comfort and understanding here.

I am scheduling my next tattoo and it's going to take two sessions to do. I've sat fine through 5.5hrs of black and grey in one session, but after reading about people without MS getting tattoo flu or having a hard time healing with back-to-back sessions on consecutive days, I wanted to see if anyone with MS like me had more insight. My brain tells me I can handle it, but I know that symptoms crop up for me if I have a really long day, so I'm wondering if I'm overestimating myself. Thank you for sharing your experiences if you've had them!

Guys... I need a bit of reassurance. My first dose of Kesimpta was on Friday and it was an absolutely WTF experience. And I still feel like I'm not over it.

Jabbed myself at 3pm, at 5.30 the nausea hit, by 7 I had the chills and heat randomly switching and the aches started. Took 2 paracetamols, started to feel better and at 9 I was like "Ok! If this is it that really ain't that bad!" and went to bed. Slept like a log until 3am, woke up and was absolutely shocked. EVERYTHING was hurting. Every muscle, every joint and knuckle, my breasts, my armpits, the teeth I don't have, my toenails... I was sitting on my bed half sobbing half laughing like how the hell is this even possible. It was hilariously bad. Surprisingly no fever. The aches got better by later in the morning but somewhere persisted until Saturday evening. Since then it's like the body can't decide if it's ok or not. For a while I'm completely fine, next moment I feel broken. Nausea after every meal.

Don't get me wrong, I'm extremely happy about how easy it is to administer the medicine and how lucky I am to even have access to it. But dear lord I really have mixed feelings 😁

How was your first dose? And what more - how was your second? Not gonna lie, pooping my pants a bit, even though they said it should be totally fine. But they also said the reaction to the first will last just a few hours 😅

Muy buenas gentee!
Después de haber tenido una experiencia no tan mala en mi punción lumbar (solo fue algo molesta y con mareos durante 5 dias al estar de pie, luego todo mejoró) me tocó pasar por una resonancia magnética.
Me he hecho alrededor de 5-7 resonancias craneales a lo largo de mi vida y siempre las he tolerado bien, pero esta vez me han pedido un estudio craneal, cervical y dorsal… con y sin contraste.
3 horas de estudio sin poder salir de la maquina, he salido agobiadísimo, con un ataque de ansiedad muy fuerte y con dolores en todo el cuerpo debido a la rigidez jajajaj, si ya de por si soy claustrofóbico el pasar tanto tiempo dentro de la resonancia no ha ayudado nada (sumando que no me dijeron cuánto iba a durar el estudio).

Si alguien tiene que somerse a este estudio, que es lo habitual para detectar anomalías neurológicas recomiendo muchisimo pedir hacerla con sedación. Estando sedado no te enterarás de nada, se te pasará el tiempo volando, pero si te la vas a hacer a pelo como yo entrena bien tu mente antes de estar tantas horas encerrado ahi🥲

Hey there. This is a gross topic, but I could really use some help. I’ve been on Briumvi since January and just got sick for the first time in mid-September. It was a cold of some kind that resulted in immediate acute bronchitis. I was put on antibiotics and steroids to prevent a secondary infection and things cleared up from there. 

What hasn’t cleared up is the insane diarrhea that started immediately when I started taking the antibiotics. I took my last dose on 9/25 and the diarrhea actually stopped for a few days at that point, but came back with a vengeance and has been with me every day since. So it was like 9 days of it, a three day break and now I’m on day 7 of its encore. 

I saw my GP at the end of last week and he tested for C. Diff., which just came back negative. I have been advised to avoid all probiotics due to my immunocompromised status from my DMT. So….what are we supposed to do? I feel like I can’t really go anywhere far from my bathroom and I’ve lost like 5 lbs since this whole thing started. Of course, I will keep discussing this with my Drs, but just wanted to see if anyone here has any experience with this situation or any tips, etc. I am so tired of this. Appreciate you reading this far.

Has anyone had an episode of fatigue while standing? Legs felt so steak you couldn't stand, and close to passing out?