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Call for questions: Multiple Sclerosis (Patreon)

Published:
2023-07-03 07:04:25
Imported:
2026-06

Content

This one — as you may know — is super close to my heart, as my mom, Fancy Nancy, was diagnosed with MS about 20 years ago. I’ve wanted to talk to an expert in this neurodegenerative autoimmune condition for years and so this one means a lot to me. Leave questions below, fam!

Hearts,

Your Internet Ladydad

Comments

Lisa N

How close is research to getting a cure for MS? Or what are the next steps taken to get there?

Jonathan Slowey

What are some early symptoms people often pass off as everyday things? When should you be concerned enough to get evaluated?

Bevearlea

I so feel you on this one being close to the heart! My mom was dx’d 40 years ago and has lived with relapsing remitting since then. But… BUT… through a twist of fate surrounding her reaction to the COVID vaccine, we now believe mast cell activation syndrome to be more likely. She has found (anecdotally) that this is not uncommon, to see the MCAS treatment protocol relieving symptoms of MS. Could there be causation or is it just correlation?

Buddy Freakin' Guyerson

As someone who has both Diabetes and MS, is it common for MS to show up in people with other existing autoimmune conditions?

Char Harrison

I work in clinical research, and we are currently seeing a lot of trials appearing for monoclonal antibodies to treat MS. How likely are these going to be the “next” series of treatment options? It seems like they either work or they don’t.

Char Harrison

Crispr… will it change things? Certainly those with MS & ALS could potentially see large benefit from this product. But will we see it happen?

Storm

How is everyone’s MS different? I’ve seen that some people can go years without symptoms whilst others have severe symptoms that almost never go away.

Beth 🌻

Sending love to you Alie, for this sensitive topic. I feel like I have a good sense of MS from having watched the West Wing (many times) can our Ologist tell us how accurately it was portrayed in the show, 20 years ago, and maybe if it would be a different story today with modern understanding?

Diana Staresinic-Deane

My mother died from MS complications in 2004. My brother and I wonder what our own risk really looks like. My mother grew up in poverty in a post WWII communist Yugoslavia, and we grew up in the US with better access to nutrition and healthcare. I'm truly hoping we can figure out the combination of genetics, illness exposure, and environmental factors make MS possible. -- Diana S-D

Alex

What are the biggest obstacles currently for translating MS animal model research to the human arena? And what exactly causes the shift from relapsing/remitting to progressive MS (if known)?

Katelyn Barnes

My dad was diagnosed with MS back in 2001/2002, and has been luckily controlling his symptoms with an injectable medication. So the real question is, why Chinese hamsters ovaries? What is it about these “experimental” medications that seems to hold off the bodies immune response?

angelica maria yingst

My father died from complications due to MS in 2018. My twin sister and I both have been diagnosed with different autoimmune disorders (I have psoriatic arthritis, Hashimoto's and celiac.) I was wondering firstly if MS is passed genetically? Should I be seen by a neurologist? What about autoimmune disorders like MS? What is the genetics of autoimmunity and how does MS fit into autoimmune disorders?

Diana Teeter

My best friend’s little sister was just diagnosed with MS. We would appreciate any advice for her learning to navigate the diagnosis.

Will Clark

What ate some of the most helpful resources for understanding MS and living with MS, or those with MS?

Jess_Lin

There has been some research looking into the gut-brain axis and MS. Do you think it could be possible to use the gut microbiome as an easy, non-invasive early detection method? As there is no cure, how helpful would early detection even be?

Doug Koekkoek

I have Fibromyalgia and have read that I am 30% more likely to get MS. Can you explain why? What is the link? Possibly first time asker, I have not heard any of my questions yet.

Marisa

Can you talk about the different types of MS and what distinguishes them in physiological and neuromuscular terms?

JD

What’s up with the possible genetic link? Both my partner and her brother have it, but we’ve been told it’s not proven to be genetic, but also that it could potentially be?

Debra Pekin

Does exercise help or hurt advancement? And, what do you say about a gluten free, or other diet, which has been said to benefit ?

Paul Hoffman

I had a question, but I'd really rather hear answers to questions from those who have MS in their families or close circles.

Amanda Butler

First time question asker & MS patient of 15 years! Why are we so affected by humidity?? My joints always feel stiffer when it's humid, which seems to make other symptoms worse. Uthoff's phenomenon is less than phenomenal!

Amanda Butler

First time (well, second question asked today) question asker & MS patient of 15 years! Where is research at for pregnancy hormones and MS? I don't plan to have kids, but if we can use whatever helps pregnant people's symptoms remit for the good of all, I'm in.

Jaime Jensen

I have this question, as well!

Chris Curious

Why do people with MS do better in the cold?

Han O'Reilly

Wow been waiting a while for this one! Also invested as my mom was diagnosed a couple of years ago. Hence my question… I’ve heard different things about how heritable MS is - would love to know what your guest thinks about that. Thanks! -Han

Rachel Murdock

Also curious about the genetic aspect of MS since my mom, her dad, her sister & my sister all have it- I feel like it's a matter of time before I get my diagnosis.

Chase Penix

Are there external factors that may increase the risk of MS? ie Lead pipes, food additives, or some kind of pathogen?

Between Dumplings

If it helps: I get migraines but one year I developed symptoms they suspected might be MS. Turned out to be ocular migraines. (Balance/stumbling, visual aura that included blind spots). In case that helps. ❤️

Between Dumplings

This seems like a perfect example of the benefit of AI (can we get a better name for it so people don’t think “robots”) which has been found to crunch the data on pancreatic cancer leading to much earlier diagnosis. It seems we have so much data on MS I bet we could make great strides here. Also does it afflict more females or is that flim-flam?

Aimee Martin

Interesting timing, Internet Dad: my mom is in the process of getting tested for MS. What are the best ways to support someone with MS? What can we expect for long-term care?

Adam Foote

In recent years a number of relatives on my Mom's side of the family (including her) have been diagnosed with autoimmune disorders. Alopecia, sjogren's syndrome, and other things I can't remember right now. I'm really curious about genetic and environmental factors that could contribute to these diseases. My Mom and her siblings grew up as farm kids and she remembers playing outside while the crop dusters were overhead. Plus they often had hunted food for dinner, presumably shot with lead bullets. Could these circumstances (lead poisoning and pesticides and such) have been a major factor in all of them developing fairly rare disorders? And, since I'm a descendant, what are my chances of inheriting autoimmune issues? Finally, do we know what role epigenetics plays in MS or other autoimmune disorders?

Allegra Favila

I would like to know if there is scientific proof of any special diet helping MS? My question really spawns from the bevy of pseudoscience/pseudo health advice that people with chronic illness (like me) are given everyday. I have ankylosing spondylitis and am told constantly to change my diet—eat only meat, eat vegan, no nightshades, no sugar, on and on. So I’d like to hear about this from an actual expert.

Heidi Wright

How is it the disease varies so differently from person to person?

Kathryn

My mother-in-law has pretty progressive MS (no use of one leg, multiple daily seizures). She says that large doses of Vitamin D (15,000 IU daily) help to stave off symptoms and in some cases manage them for those who have already been diagnosed. Flim flam or real?

ConnieConnieBoBonnie

Autoimmune diseases are a bitch! We have a smorgasbord of them in our family - celiac, T1D, hashimotos, scleroderma. No one has MS yet… is it one that accompanies other autoimmune diseases in families?

Kathryn

I know MS isn't supposed to be passed genetically, but can family members be genetically predisposed? Several of my in-laws have it, but I don't know anyone else who does. Seems suspicious👀

Kathryn

Why is MS more common in women, but more deadly in men? (Flim flam?)

Jacintha Jaa

What is the correlation between MS and sensitivity to temperature?

Kathryn

With seizures and some unusable limbs, how can someone with MS stay active?

Ruby Johnstone

Is it possible to make an MS diagnosis without the presence of lesions?

Lilly Hart

hi dad, the two people in my life with MS have had there MS either related to (triggered by) lyme or have had MS mistake for lyme. Is there a connection between the two can one really trigger the other how often does it happen, just curious about the connection.

Lizzy Martinez

My mother in law was diagnosed with MS in her 20s. Since then, she's also had various types of cancer throughout her life, including a life threatening glioblastoma she had removed this March and is recovering from. Are there any correlations between MS lesions and cancer?

Lilly Hart

My girlfriends dad has MS and her mom has her take D3 religiously to help decrease the likelihood of developing it does this supplement really help, if not this one then which one if any?

Lilly Hart

why does it seem MS is more common in women then men?

Aeriel Belk

How accurate is the depiction of MS in the West Wing?

Madi Royal

Is there a connection between MS and Epstein Barr virus infections?

BeckytheSassySeagrassScientist

When does MS impact a person mental as well as physically? I've had an uncle and a good friend with very different symptoms.

Chandler Witherington

I have a friend with MS, and several of her immediate family members (dad, sister) also have autoimmune diseases- Celiac's, eosinophilic esophagitis, etc. Could there be genetic factors that make someone more susceptible to autoimmune diseases that could be passed down but may manifest in different ways?

Lauren Seibert

As an orthotist, I work with so many people with MS, helping with the extremity weakness. But I have always wondered if there was a connection between the type of MS and if it affects one or both sides of the body?

JBerg

Is an MS diagnosis more like an elimination diagnosis -- it's NOT one of these other things so it's probably MS? How do Raynaud's & Alopecia Areata relate to MS? Are they precursors to an MS diagnosis?

Catherine Townsend

My sister was diagnosed with MS 40 years ago at age 20, and my brother was just diagnosed at age 62. What is the heredity link for MS? I am the remaining sibling and wonder about all of our children. My first cousin and uncle also have MS.

Karlie V

What is it, exactly, that is causing the breakdown of the myelin sheath?

Karlie V

Can MS impact certain neural networks more than others, or does it impact all neurons pretty equally?

Gene Comstock

1. I usually read that demyelination from MS occurs primarily or only in the CNS. How often do we see MS damaging myelin sheaths in the peripheral NS? 2. Does demyelination occur through different mechanisms depending on what type of nerve cell is involved, or what type of glial cell is producing the myelin (oligodendrocytes vs Schwann cells)? Note: First time asker, very excited for this because I’m disabled/chronically ill with nervous system symptoms, and my degree was in neuroscience! (they/them)

Alicen Meysing

Is MS genetic? I know there are different types of MS as well, so I’m curious if one has more of a genetic component than another.

Ray Holloman

How long does it typically take for someone to get a MS diagnosis?

Shanna Mandell

Is ALS under the umbrella of MS? I once heard this but figured I should ask an expert.

Becki Grady

I have MS. Is there any viable treatment for bladder control issues? And, why is that a symptom to begin with!?!?

Jen

My mom had MS for most of my childhood and then got downgraded(?) to ADEM (Acute disseminated encephalomyelitis) after I became an adult. Can you speak to how these two diagnoses are different, and what a change in diagnosis might mean for someone who has lived for over a decade diagnosed with MS?

Gwen Kelly

I had a friend who used marijuana medicinally for her MS, and said it helped relieve a lot of her worst symptoms day to day, more than any medication she’d been prescribed. Has there been any research into treating MS (or symptoms) with marijuana? If so, is it supported? Does it work? If so, do we know why it works?? P.S. I love how for much of medicine, even with common FDA approved medications, we know *that* they work, but we don’t totally understand *why* or *how* they work (e.g. the common antidepressant Bupropion).

Amanda Butler

If I could find a place that's 70 and sunny year-round, I'd feel amazing!

The Joyful Spitfire

1st Time Question Asker Here: my introduction to MS was through The West Wing when Aaron Sorkin weaved in the condition as a big plot point for President Bartlet. How much did the show get right? Do you think it raised the right kind of awareness/any research for the disease? In your opinion, what does stress do to someone with MS?

Rebecca Morrison

OMG!!! My mom was diagnosed in 1996, she passed in 2022 and never ever will I hear "MS" without thinking of her and all of the work she did for her local and online support groups. I've done the MS Walk every year since 1997. FTQA - My mom's official cause of death was "multiple sclerosis with decline", is it actually death by MS?

Rachel von Morrigan

We have several folks in my family with MS, which leads me to believe it’s genetic, but I hear a lot of folks say it isn’t. Could it be something like a gene mutation or something more susceptible to an MS diagnosis passed genetically?

Leah Northcott Bentley

FTQA: Are there treatments that reverse and/or repair damage to the myelin sheath? (My Grandma, now passed, had MS from the time I can remember & was receiving an experimental treatment of "Calcium EAP" that claimed to do so.)

Lee T.

Echoing all the questions about a genetic component to MS… my aunt has lived with MS for 3 decades and my mom has a slew of autoimmune disorders. I have raynaud’s syndrome and hypothyroidism. Every time my extremities tingle for no reason I think “great, here we go!” — will they ever confirm or deny the genetic link?!?! Speaking of tingling extremities, what ARE the most common symptoms of MS? And how does one go about testing? Is it expensive? I’ve heard that B12 and D3 supplements can help with autoimmune disorders. What does the research indicate?

Katie H

I have a friend with MS, and he’s one of the healthiest, fittest people I know. Is there a spectrum of how severe it can be be, or can lifestyle impact how it progresses or impacts someone?

Becca Huber

Wow, really appreciate this topic, thanks Alie! I was diagnosed with MS 3 years ago when I was 23 and I'm currently getting my PhD in chemical engineering studying brain mimicking biomaterials, brain injury, and astrocyte activation. I am wondering: 1. Is disease progression driven by B cells or T cells or both? From my understanding, the EBV virus looks a lot like myelin and the memory EBV T cells enter the CNS *somehow* and when they recognize myelin they set off alarms to recruit the B cells who are gonna freak out and wreck havoc. Latest therapies are wiping out B cells and working really well, but those T cells are still there setting off alarms! What about the T cells? Have any therapies been designed to target them? 2. I've seen some early papers for vaccines targeting the regulatory side of the immune system, possibly to target those EBV memory cells. But I haven't heard of any vaccines for immune suppression, how new is this and how likely is it to work, or to pass the FDA, what might that timeline look like? 3. Where is the field headed for regenerative therapies? Are the stem cell studies looking favorable? Is anyone trying to target the oligodendrocytes to make them pump up their myelin production? <3 Becca (they/them)

Tizmyn

Hey Ali! Thanks for this topic! Curious about RRMS and any known effects on pregnancy, specifically if there are any strong arguments for or against epidurals? Needle near spine vs. lower stress (through pain relief) potentially lowering chance of relapse postnatal?

Bass Cliff

What is the differences between MS and ALS?

Rob Lara

Is it true that vitamin D can help prevent MS in some way?

Chris Curious

Is MS something you can inherit genetically?

San Juan Josie

Why is MS more common north of the 40th parallel? Colorado has a high rate of MS, a few other states are higher. Is it the geographic or the demographic?

Megan H

Just why?

Mandy Hobson

My step-brother was diagnosed with MS last year and he’s in his early thirties. It breaks my heart. How long before he can’t function enough to work or be an active father/husband to his daughter and wife?

Vita Trincali

I seem to remember something about bee stings used to lessen the symptoms of MS. Might have seen it on tv many years ago. Any truth to that or total flimflam?

Verena Runstadler

I’ve heard that MS affects more women than men, like many autoimmune diseases… why is this?

Matt Hirschl

Are you encouraged about the results from mesenchymal stem cell therapy?

Ferf Brownoff

I once heard that Canada has a higher rate of reported MS cases - is there anything to geography or environment that might correlate with an increased likelihood of developing MS?

floraandthefaun

my dad has ms and besides medication he really focuses on stress reduction in order to keep his symptoms in check. other than a low-stress life generally being beneficial to a person's health - is there a connection between stress and ms symptoms spiking? also sending good thoughts to everyone who is navigating living with or in conversation with ms. <3

BadWolf1701

Hey, my dad has Parkinson's and uses a lot of meditation for lowering his stress levels which directly translates to less extreme symptoms for him. Are MS and Parkinson's similar in that way? Are any treatments used for MS that would also be useful for Parkinson's? Or are they completely unrelated things?

Thelonia Saunders

As someone with scleroderma (the skin version of MS), how do you learn to find peace with your body when it is actively fighting against you?

Sarah Meaden

Dangit am I too late? My husband has MS - why do we keep hearing MS has been "cured" with a new treatment but then hear no follow up? Would speech therapy help those who suffer from slurring? Why do some RR MS patients switch to Progressive MS?

Renee K.

First question: What questions remain about the pathology of MS? Second: How can I learn more about the field of neuroimmunology?

Mark Schurmann

My brother had MS and was prone to fits of laughter. He often could not tell a joke he thought was funny because he would be laughing so hard at recalling it. Is this common in MS patients and if so what is the neurological reason?

Vero Tavares

What is the diagnosis criteria for MS?

Maddie Meehan

First time question asker and future doctor here!!! My grandpa died of a very aggressive form about 5 years after diagnosis... What is the mechanism that makes the aggressive form fatal vs. living with chronic symptoms or relapse/remitting? 2. Can you talk about HSCT and why it works?

Sheri Berry Bo Berry

Why the fatigue? The bone crushing, breath taking fatigue where washing your hair feels like doing a HIIT workout. Do stimulants help? Are they worth it?

Andrew

Hi Alie: First time question asker. Can ologist translate PIRA for non-pro MS patient. Why am I getting worse when the disease is not progressing. 6 years on Ocrevus, but symptoms continue to develop. [Every episode of Ologies gives me a new interest and piques my curiosity. I learned that your dad and I share the same birthday. Mine is 9/5/55. It was also Labor Day. Also, I am a twin. ]

Theladyisageek

First time question asker. Is there a causal link between herpes viruses and MS?

James R

First time question asker! My province in Canada, Saskatchewan, has one of the highest occurrences of MS in the world. Some explanations that I'm finding are that it might be linked to how much sunlight exposure we get, others say that it's geological/environmental factors. Are there any likely or known reasons why MS would be linked to certain regions?

Kate Oldham

No questions, just a thanks—I got diagnosed at 25 three years ago, and I’ve been looking forward to the episode once I started listening to ologies. Thank you for caring and for making this diagnosis less scary!

Stefanie B

Hi Alie! There are some (mostly in the "alternative medicine" fields) who recommend LDN (low-dose naltrexone) for MS and other autoimmune diseases. Does the research support this? If so, why don't more physicians offer this treatment to their MS patients? And what about FDA approval? Thank you so much!

NightGlow

I've been hoping you'd do an episode on MS (as someone with it). You have a knack for asking the questions coalescing in my brain as I listen, so I know that you'll get to the heart of this topic in a way that will feel like I'm getting to ask my millions of questions. I'd love to know more about the connections being researched between the gut microbiome and MS (and other autoimmune conditions). Thank you!

Steve Kelem

Is there any link to mercury in dental fillings? Are there diets that help manage the symptoms? Thanks!

Katie Murray

FTQA I’m a hospice nurse and MS can boggle my mind sometimes. Why does on individual’s decline from MS sometimes look so drastically different from the next individual?

Shannon Holly

Although some people are diagnosed with MS and we don’t know why, is there any research connecting addiction and Dx of MS?

Lauren Hurlburt

I've read that diets that are high in fat and protein can be good from MS as the myelin sheath is made of protein and fatty tissues. Is there any truth to this?

Isabelle Newman

Why are things like MS and other autoimmune disorders so much more prevalent in female populations?

Isabelle Newman

I know that mindfulness, yoga, meditation, gratitude can be a good form of “alternative medicine” or be used in conjunction with western medicine therapies: is there any research to show that these techniques help people suffering from MS?

Olivia Brien

My wife was diagnosed on June 30th. We are both big fans of the show! I am so excited for this episode. It honestly gives me such hope that your mom was diagnosed so many years ago! ♥️ Love from Lawrence, Kansas!

Katie

What is the connection between viral infection/persistence and developing MS? My mom has MS and her Dr believes her previous Epstein-Barr infection may have played a role. Can links like this give us any guidance on treating long covid?

Bevearlea

Did you ever release this episode and I just can’t find it?

Patricia Allison

Listening to the OCD episode and I just fucking GASPED (Alone in my kitchen) and ran to patreon when you said you had an MS episode coming. Are you still looking for questions? I was diagnosed 8 years ago and sometimes joke that it’s a great time to have MS because they have learned so many new things recently. Can you ask about the connection between MS and the Yamnaya migration. Is that real? Is that flim flam?

Patricia Allison

Yes, I ‘hearted’ my own comment because my excitement is that big

Ranger France

Released yesterday!!! 2 years in the making, must be a good ologist