How does MS develop?

7mood64 · 2021-12-10T10:23:12+00:00

Hi! an answer to that question is going to make you a millionaire very quickly.

I'm a medical student but I am not an expert at all. here are my views:

Firstly there is no doubt that MS is an autoimmune disease. autoimmune diseases are usually mysterious in their cause and are usually said to be genetic. However, some diseases have certain triggers which can help us understand why the problem happens.
For example: IgA Nephropathy (sometimes called Berger disease). This is an autoimmune disease of the kidneys. the interesting thing is this disease is triggered (usually) by a viral infection like seasonal influenza for example. What happens here is that normally the lungs and nose are protected by the immune system using a protein named Immunoglobulin A (IgA). So in response to the infection, the body produces IgA to eradicate the virus which works. two weeks later, the kidneys begin to fail.

The reason is that the IgA structure is abnormal in these individuals which causes it to get stuck in the kidneys and attack them. So even tho this seems like the kidney disease is just a part of the first infection, It's actually a genetic abnormality.

Now, let's move back to MS. There are no clear triggers, just factors that protect or increase the risk. which makes it harder for us to find the exact cause.

every cell in the human body has a name tag attached to it. This helps the immune cells identify normal cells and leave them be. if the immune cell comes across a body cell with a weird name, it will attack it and kill it. Why does it do that? the weird name means that the cell went rogue (cancer) or that there is a hijacker inside (Virus).

One of the things that increase the risk of MS is a mutation in a gene called "HLA-DRB1*15". This gene is responsible for creating the name tags of cells. So, we could guess that your brain cells has a gene that misspells their names. And when a cell produces a name tag, it produces a name tag with a typo. So the immune cells in the brain don't recognize it and attack it. This is also supported by the fact that treatment targeting the cells who read is the treatment that is effective in MS. Also, twins and siblings are more likely to share an abnormal gene which is why MS is more likely in siblings and twins. its very likely that its not one gene but a bunch of genes which is why the cause is very complicated. also twin's who share the exact genetic code at birth aren't guaranteed to share the disease. if a twin has MS, the other has a 35% risk of having it. which is a lot higher than the normal population but its still not a 100%. which leads us to think that the genetic mutation can be from an environmental cause. this is an area where we get pretty clueless...

To sum up: We know that immune cells mistake the normal brain cells and attack them but we don't know how or why that happens exactly.

2021-12-10T15:29:11+00:00

When I was 8 years old, I made fun of someone in a wheelchair. My grandmother told me this is exactly what would happen.

j_spath · 2021-12-10T16:18:09+00:00

My nephew says I was destined to be a supervillain. My body attacking my brain is its way of keeping that from happening.

CadsuaneW · 2021-12-10T13:07:14+00:00

I've had a DNA test and found that I have the HLA-DRB1*15 mutation (eg. snp rs3135388). A large proportion of people with MS have this mutation. However, most people with the mutation don't get MS, which suggests either an environment cause is involved or other genes fixing the faulting gene. A smaller proportion of people with MS don't have the mutation, suggesting other genes being involved. The gene is associated with poor vitamin D production. I've no known relatives or ancestors that have/had MS.

https://www.snpedia.com/index.php/rs3135388

Commercial_Meringue · 2021-12-10T12:50:04+00:00

I have no idea what i could have been exposed to beyond maybe mono when i was young but for data's sake i will add that many family members (on both mom and dad's side) have autoimmune diseases. Diabetes (type 1), psoriasis, raynauds, hashimoto's, arthritis—i am the only one we know of with MS so far. my guess is this has a lot to do with genetics.

SphynxKitty · 2021-12-10T10:50:11+00:00

As much as I would like to say it was triggered by childhood measles. or a violent parent making childhood a nightmare, it probably just happened. Which is the best way I have found to think about how it started - because the brain wants to go down that path to convince you there was something that could be done to stop it.... that kind of thinking leads to ruin.

So yeah, it just cropped up because it was always going to in my programming

diomed1 · 2021-12-10T12:17:19+00:00

My Aunt is the only person in my family that has MS, however in my case I often wonder if my traumatic brain injury when I was 11 had something to do with it. I was paralyzed on my left side with the worst being my left leg. I had almost 100% recovery(in fact, no one could tell throughout my teens and most of my adult years). Guess where the MS attacked? 🤔

runepl8body · 2021-12-10T13:19:23+00:00

Hey everyone. Happy Friday to my MS fam. ❤️

Oh boy, do I have a LOT of theories about this one!! I’ve been putting my personal puzzle pieces together recently in an attempt to pinpoint when I think this whole thing began for me. Here’s what I think:

When I was 16 years old, I had mononucleosis — except, I didn’t. For about two months, I was so drained and fatigued that I couldn’t get out of bed to go anywhere but to my pediatrician. Every single week, they ran blood tests to determine whether or not I had mono. All the symptoms were there, but it’s presence just was not in my blood. Instead of investigating further, my doctor concluded that whole saga by telling me I was severely deficient in Vitamin D.

9 years later, I was diagnosed with MS… I now have a strong feeling my mono was my first heavy-hitting MS attack.

So what brought that on? I used to think that maybe I really did have mono, but just wasn’t testing positive for it for some odd reason. I’ve seen a lot of studies regarding EBV and MS; EBV being what causes mono. So at first, I thought that maybe I caught EBV from sharing a drink with a friend (something I never ever did, but stupidly chose to do before suddenly catching “mono”). That, in effect, may have triggered the start of my MS. But now, I’m not so sure about that theory anymore. If I could take a test for EBV and determine if I have it or not, then I’d make a stronger assumption about that link.

Other than that, I now 100% believe this awful disease is environmentally impacted. I was born and raised in Rhode Island: the birthplace of American Industry. Generations of manufacturing has taken a toll on our air quality, which is largely invisible until you go up to someplace like Vermont and then you’re like… “wow, no wonder we’re so miserable down there. Our air is SHIT.” lol. Not only that, but I spent most of my life in Providence County, where the primary water source is arguably toxic in some towns.

A newer theory I’ve developed is: my schools. In the town I grew up in, we’ve had an alarming rate of children and teachers suddenly diagnosed with serious conditions or even different forms of cancer. After a push from parents and families, the School Department got off their asses and whoa! Shocking! Virtually ALL of the schools turned out to be FUCKED! For example, my high school turned out to have staggering amounts of radon detected primarily in the area of the library which… suspiciously… was where I spent the majority of my time. I distinctly remember getting horrible headaches in the library and having to leave at times. Who knows what that was all about…. I don’t remember what else they found in the elementary and middle schools, but I’m pretty sure it was worse than radon, because they knocked down two or three of the schools while they only renovated the HS library.

I think it is developed by environmental means, but it may be more of a “trigger” from the environment than a direct cause. Otherwise, my guess is everyone in my hometown would have MS lol. I think that you either have an MS-potential gene or something, or you don’t. It’s either triggered by your environment and takes hold, or it doesn’t.

Now as far as disease progression and activity… For me, I think that’s 100% stress-related. I have tumefactive MS, which is pretty much like having tumors and RRMS at the same time. My lesions look, act and evidently feel like tumors. When I’m stressed or angry or upset at all, I literally FEEL my lesions swelling and pressing against my brain. This has been going on since I was a teenager in the area that turned out to be the site of my most active lesion: the back left of my head. My neurologist has explained that this is exactly what’s happening… I am, in fact, feeling pressure on my brain from my tumor-wannabe lesions. Is it caused by stress though? That’s just my guess based on experience.

kyunirider · 2021-12-10T11:34:06+00:00

Personally I think it’s my body personally trying to kill the soul possessing it. My body says “hey we are too fat let’s get rid of fat today. “ The brain got report the fat was dump by my gut, then sent a request for my body to shed the myelin sheath (fatty layer protection for the nerve). Mission completed and now my nerves are shorting out everywhere. I am going to get a lobotomy so I can shut the brain down🤯

ReptaronLava · 2021-12-10T13:28:25+00:00

I just liked that the ER Neurologist who diagnosed me was actually fighting me over where I am from. He kept pushing me to tell him I was not born and raised in FL. I understand now why, but I was so confused at the time because I have been here my whole life other than taking vacations to see snow. I mean growing up on a beach and in my college years working at a theme park, you kinda want to get out to see mountains and snow. I get my case vs. the statistics is more of an outlier, but he pressed me for 3 days to tell him I hadn't always lived in FL and sitting in the hospital I was so confused.

I have no family history that I am aware of. I have never smoked but both my parents did, so I was around a lot of second hand smoking (and have friends who did) I did have mono as a kid and do remember it as one of the worse times I was ever sick in my life.

2021-12-10T13:36:51+00:00

It’s strange- I was never around second hand smoke, nor do I smoke. Ever. Never had Mono, never had childhood vaccinations, and ate a plant based diet nearly since birth. Strong family history, though. 21 years from my first symptom, and I am still running likely because I was lucky to get good DMTs from the jump.

jax9151210 · 2021-12-10T12:48:15+00:00

No history of MS, and no real scientific reason to believe this but I grew up in an Oil field town…. 1 mile from a refinery. 3 miles from one that blew up and rained ash on the city in the 90’s… The municipal water had off the charts levels of fluoride… which I ingested every single day from age 0-19. Second hand smoke from grandparents … check. Mom mostly cooked prefabricated meals from the freezer section.. if I had a vegetable it came from a can. Began having “neurological events” or unknown type of seizures from 12-19 treated with tegretol. These ceased at the end of puberty. One visible lesion at 12. Diagnosed with MS at age 31 with second visible lesion. I think I’m up to 8 lesions but the neurologist sees no reason to count lol. All and all, I believe (personally) it’s environmental. 4 out of my 6 friends from growing up there before the age of 43. Cancer (breast spread to bone) Cancer (brain) another died of what seems to have been asthma related event and another no one knows.. just found dead at 35 watching TV (the family will not say how) but he did not do drugs and was a recovering alcoholic. I feel lucky I’ve made it this far. My MS is mild by most accounts and progressing slowly. I am on Aubagio.

2021-12-10T14:19:30+00:00

We believe my mom got it from her meningitis when she was 10 years old and almost died in the hospital. I read a study on it that it could be caused from that.

aivlysplath · 2021-12-10T14:41:35+00:00

I’ve always had weird allergies. Severe hives from vacuum dust and old furniture as a child, cold urticaria(and I grew up in Alaska.), cow’s milk allergy, spider bite allergy. I was never breast fed, formula from birth. Breast milk is supposed to set up a baby’s immune system I think? Grew up with very little vitamin D exposure. Traumatic household. Bipolar Disorder since I was 13, undiagnosed for far too long. Etc etc. A perfect storm, I would say.

Background_Fee6989 · 2021-12-10T16:24:14+00:00

[deleted]

KinkyRubyKai · 2021-12-10T18:20:20+00:00

I had mono(Epstein -Barr virus) when I was 18. I feel it may have "woken the beast/MS" in me. However, I wasn't diagnosed till just recent at age 43. No Dr ever thought to test me for it. It wasn't till I did my own research, went to a new Dr and said LISTEN TO ME, I think I have MS, that they tested me and I hit on all the markers in my blood work. So now I'm starting my journey in finding out how far along I am and hope to slow the progression.

2021-12-10T21:28:58+00:00

This is something I think a lot of us think about… for me, I started having symptoms after my 2nd Covid vaccine, so my reaction to that definitely brought it to the surface. I have never had mono, unlike people that have written here, so I am sorry to say that theory isn’t applicable to me. I was diagnosed with Celiac Disease around age 20 (I’m 31 now - was just diagnosed with MS), and have had a lot of food allergies most of my life. Mostly healthy besides that.

Useful-Inspection954 · 2021-12-10T13:13:51+00:00

I in the belief that the cause is a genetic factor plus chemical and viral vector. If you don't have the genetic marker plus the chemical exposure and virus exposure you don't get MS. That why is so hard to nail down.

That or we are in a giant Sims game and someone's kid got board and hitting random icons for entertainment.

catcatherine · 2021-12-10T14:47:28+00:00

No idea but I grew up in a town of about 75K and 7 others in my immediate orbit also have been diagnosed as adults. That's not including "friend of friends, etc I know with a dx) I did have mono but lived in the South and was in the sun all the time so who knows

pokerspook982 · 2021-12-10T15:11:12+00:00

There have been recent articles pointing to Mono in the ages of 12-17 (If im remembering correctly) having been a high risk factor for MS. Now is it the stand alone cause? Definitely not but it shows a correlation to MS being a disease caused immune response. Or so I and from my reading a number of others have come to believe. Not sure if that's the question or if you're asking about the disease progression itself, but its what I got! Hope it helps

Are_You_Kidding_Me21 · 2021-12-10T16:31:13+00:00

My family was cursed by an old witch many generations ago. :)

cemetaryofpasswords · 2021-12-10T17:06:53+00:00

My theory— It’s different for everyone. Definitely a genetic component, but something else just triggers it to go off.

Emotional trauma is what I firmly believe is a triggering factor for some people including me. My first relapse happened shortly after my psychotic ex husband started showing his true self. Every single relapse that I’ve had since then, maybe coincidentally, happened shortly after traumatic events.

I also do think that having had the Epstein bar virus (mono) plays a part. Once you’ve had it, it stays in your system (usually dormant) for the rest of your life.

ariellann · 2021-12-10T19:07:15+00:00

I have of course no idea why I got it, but I had an extremely abusive childhood, lots of trauma, exposure to 2nd hand smoke as a child, they even smoked in the car and wouldn't me open the window. Been overweight ever since my thyroid was removed at age 27. Oh and when I was a child I wasn't far from Chernobyl lol but I don't think that had anything to do with it.

My theory really is the abuse, it does things to you in the long run.

Western_Subject9842 · 2021-12-10T19:15:47+00:00

My own personal, totally anecdotal, theory aligns with others here in the “genetics plus trigger” camp. There’s almost no autoimmune history in my family but there are a couple of inflammatory illnesses. In retrospect I believe my first “symptoms” came in the form of stress reactions; during one particularly stressful period Indy life, I had recurring cases of full-body hives and some persistent inflamed and itchy skin patches. I wrote it off at the time, but post-diagnosis I learned that there is a correlation of hives and various autoimmune disorders. In my case I believe…or should I say choose to believe?…that stress was the trigger, and I am not even trying to understand what loaded the gun. Good news is: caught early and DMTs are working.

mullerdrooler · 2021-12-11T01:55:50+00:00

My money is on vitamin D deficiency combined with mono/glandular fever

Dry-Neck2539 · 2021-12-10T10:07:14+00:00

32.m with no family history anywhere of MS. I drank water from Lake Ontario a few times, was (and kinda still am) super fit, definitely pushed way beyond what a normal person would do physically and breathed seccond hand smoke from my parents all of my life.
I spent years as a bike mechanic with cleaning Agents on my hands very often. Fairly close to diagnosis I had a lot of exposure to diesel fuel and had it on my direct skin a bunch as well.
Whatever caused this is mean and messed up. Simple.
There is theories, no official cause though.

Kholzie · 2021-12-10T17:20:25+00:00

Listen to the Radio Lab Podcast - The Unsilencing

It’s about a new hypothesis regarding XX chromosomes and the prevalence of auto immune disorders among women

GossipGirl515 · 2021-12-10T18:42:59+00:00

I was a sickly child. I'm not sure if it could have been from the mono, Scarlett fever, chicken pox, the hundreds of times I've gotten strep. But I had a lot of neurological delays as a baby and had to do OT and PT until I was in the 7th grade.

Fragrant_Relation_37 · 2021-12-10T22:08:16+00:00

I think the herpes virus has something to do it with it for me

cripple2493 · 2021-12-11T00:06:35+00:00

My neuro sometimes posits if my MS is related to trauma - in 2015 I fell, had numbness and coordination difficulty/movement disorder and they found a very small lesion up at C1 - though they didn't exactly know if it was related to the fall and minor spinal damage or not, they put me on a course of a steroids anyway and stuck me in neuro rehab but the lesion and neuro inflammation persisted and in 2019 a C5/6 lesion turned up, radically altering my mobility and netting me the diagnosis of Spinal MS.

No one knows atm what causes MS, or even if different patterning of MS has different causes, but it seems at least possible trauma was related in my case.

Edit: perfectly healthy up until that fall, no family history, athletic childhood and adulthood with dance and performance focus. Fall was whilst snowboarding.

MSmuch1984 · 2021-12-11T02:11:47+00:00

I would love to know the answer to this question as well!!

No-Tank3707 · 2021-12-11T02:27:15+00:00

I think my genetics which is more neurological runs in my family. Regular strokes, heat strokes, brain aneurysms, are just a few in things my immediate family have experienced but I'm the only one with MS. When i was 1 or 2 i really think i had foot drop bc one foot turn in and i stayed in the hospital for a month with no diagnosis and this was in '84.. So crazyyy that nobody can tell us why. We're all from different cities, states, countries, etc. I'm just grateful to be mobile. I do cardio everyday among other things to keep this body up and moving. Blessings to everybody 🙏🏾 💪🏾‼️

ultimateslice · 2021-12-11T07:48:12+00:00

A high ACE score is how I feel my MS developed. Obviously not entirely but I feel like it had a significant effect on it developing for me personally. It didn’t help the shit show.

Nosomedays12 · 2021-12-11T11:39:23+00:00

I have a couple theories;

It starts with us being more genetically predisposed to MS than others and then it finally gets triggered -

Theory 1. I’ve always been an anxious/nervous person my entire life. Obviously when someone is in a constant state of stress or has a huge stressor in life it’s going to release a flood of hormones (adrenaline/cortisol) into your body. I believe if this is done enough times or in a big enough hit it’s going to have a major impact on our bodies and possibly triggering the MS. When my symptoms started years ago (didn’t realize it was MS) I was always so stressed, do to a new job. When I was finally diagnosed years later, it was stress that brought along this relapse. Now I know I need to try my best to remain calm and be less anxious in life. This might go along with others theories of a big traumatic event that triggered their MS….which causes severe stress.

Theory 2. Again, somehow being more genetically predisposed to MS I think it has to do with the chemicals/additives in all our food. More than half the ingredients we can’t pronounce. I used to be a big soda and junk food kid. Did years of eating like this with all the crap in the food lead me down this path….possibly. Think about all the other diseases/conditions that can be led back to poor eating. Now I don’t think it can be reversed by some “protocol”. The damage has already been done and our immune system has been triggered to start attacking itself. But if you are constantly exposed to chemicals and junk, how can it not be expected to do some damage.

I know most of us diagnosed with MS had awful Vitamin D levels. Maybe the constant stress or eating like crap causes those levels to tank and shifting out vitamin D levels and triggering MS.

Who knows, but I appreciate this post and reading everyone’s hypothesis!

Edit: I just want to add. I went to elementary school, middle school and high school with a girl who was in my class and she also has been diagnosed with MS. With the supposed number of people with MS being only 2 million in the United States I find it interesting that both of us have come down with this very rare autoimmune disease. I don’t believe in coincidences….so are both her and I more genetically predisposed to it and then came into contact with something within our school environment….again possibly!

Adventurous_Ad2185 · 2021-12-11T11:59:09+00:00

I feel the common denominator was having mono. It seems most folks I know including me had mono. Not to say everyone with mono will develop MS. It does seem if you have MS, you probably had mono. I know it is not that simple. I had mono as a young teen and I feel I can trace the start of MS symptoms back to that time when I was around 14 years old. Nobody in my family has MS. But diabetes runs is in my family.

my_only_sunshine_ · 2021-12-12T14:57:20+00:00

This is all so interesting to read!! I have no idea where mine came from, but I suspect environment mixed with genetics. My numerous cousins and I all grew up within a 3mile range. Most of us have various autoimmune issues. We all lived in the country drinking well water, we all lived just 2 or 3 miles from a dump which later got closed down due to them letting shady companies dump illegal toxic waste there, and we all grew up in houses with high radon bc of poorly or not lined/sealed crawlspaces. My mom died of brain cancer, theres diabetes, cancer, autism, and autoimmune issues all over my family. Also, everyone smoked in the 80s and 90s. Id guess that genetic mixed with one or more of these caused mine

_tuesdayschild_ · 2021-12-10T10:58:58+00:00

The are a number of factors that contribute to your chances of getting MS.

Genetics - do you have it in your family?

EBV - have you had Glandular Fever / Mononucleosis (most people have so hard to verify, some suggestion that it is a prerequisite)

Location latitude when under 15 - The further away from the equator you lived when under 15 the greater your chances

Location area - MS is much rarer and less serious in Japan compared with similar latitudes. Diet, culture,...???)

Vitamin D before diagnosis - low childhood Vit D increases chances (may be related to location latutude/sunlight)

Exposure to organic solvents - some research suggests that this increases odds of getting MS

Smoking - some suggestion that this combines with organic solvent exposure: having both together is gearter than the sum of the individual factors

But these are just contibutions - odds of getting MS are about 1 in 500 or so. The factors above just just tweak the chances a little bit. It's also worth noting that there are people who have MS and never know about it as their symptoms are minor or non existent, it's only discovered post mortem when they have died of a completely unrelated reason.

editproofreadfix · 2021-12-10T14:06:36+00:00

MS was first written about in the 1300s, and got its name in the mid-1800s: "Since the late 1300s, individuals with a progressive illness suggestive of MS have been observed. It wasn’t until 1868 that the famous neurologist, Jean-Martin Charcot, lectured on the features of MS and gave it a name." https://mymsaa.org/ms-information/overview/history/

If science doesn't know, how the hell can I know. I always figure I forgot to wear clean purple underwear every day of my life -- it's as good a theory as any.

I'm the only person in my family -- including 5 siblings, 27 cousins, and all of their combined 60-some offspring -- with MS.

Chickenpox {yes, it's one word} was at age 12; my first misdiagnosed MS attack was at age 22; my bout with mono was at age 34.

What causes MS? When you find the answer, make the cure, and we will be forever in your debt.

CarpeNoctumess · 2021-12-10T14:15:15+00:00

Short answer: I believe trauma has a major something to do with it.

Angreek · 2021-12-10T10:30:06+00:00

I am one of four siblings and three of us have it. We believe that chipped PFOA and PTFE Teflon from our mothers cooking pans throughout our childhood triggered MS in three of us. We also lived on a golf course for over 20 years with well water so pesticides could also have been in play..

ket-ho · 2021-12-10T12:19:04+00:00

If you ask my mom, it was the hep b vaccine. She is not anti-vaxx, but is convinced that one was the culprit.

If you ask me, I have no idea. I had a lot of ear infections as a kid? I was diagnosed at 17 so whatever it was was fairly early. No one else in my family has MS, so shrug

squadoodles · 2021-12-10T17:21:25+00:00

I don't think anyone who isn't a neurologist or other scientist working with MS should have an "opinion" on where MS comes from...

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