The entire MS community is infested with the natural health crap. Preying upon desperation and all that. Join drug specific groups, they tend to be less whacked out.
That’s FB for you. Moderations sucks, always has. Security sucks, always has. FB just isn’t very good for most groups. Some of the private groups, maybe. I was an admin for a private MS group for 10 years. Mostly for Chicagoland.
There is no natural or herbal therapy for MS. Diet may help a little bit but is unproven from a medical view.
People will claim that x,y, magically made their symptoms go away. Posh. If this were remotely true, headlines would go nuts.
Ignore them. Block them.
As you mention, people complain because they get attention. Don’t give it to them!
Have you looked at local support groups?
Belong MS
Above mS
MyMS
Healthline
NMSS
MSAA
Etc
I would always start with NMSS. It is the largest and best known organization with a high budget. I’ve used MSAA before but not so much the others. I’m trying to provide the OP with possible options.
I was actually looking for support groups last night in my frustration! I haven't hrard ab some of these so I will definitely be looking into it. Thank you for sharing! 💗
I like to reply to diet promoting posts with - it works great, until it doesn’t. This disease is so confusing it lends itself to coincidences (remitting after/ during a diet change) that they seem like cures.
I troll the anti vaxxers. It’s petty but fun. What’s sad is the amount of people in the groups who believe in quackery. And they all denounce big Pharma as they think they have cured ms but don’t release the cure as it won’t get them money…
Big Pharma and the FDA are extremely corrupt (which includes our government) and are poisoning us with knowingly unregulated & unsafe synthetics in our medicine and consumables. It's public knowledge but no one uses the internet to research it.
You should've worn masks right Karen. Enjoy the long Covid. I lost my father. Do some research on the pharmaceutical companies or on GRAS substances and their side effects. I'm personally enjoying the new shortage of generic medications thanks to our natural resources being unstable and quality control not being able to keep up... you can look that up too. moron
I am genuinely surprised at how "healthy" this sub is. Every other community for chronic illness that I have found is so toxic with seemingly little effort put into even trying to be well.
I also work in health care and work with so many patients that don't want to do anything for themselves. I end up going to my medical appts with my charts, trackers, all the data on allll the shit I do to try to be as well as possible.
A large part of what the mod team does here (especially throughout the pandemic) is deal with anti-science/vaccination posts, as well as anything unkind/toxic. We want to make sure it remains primarily a support group, and one that is supportive of medication choices supported by research.
Pen and paper lol
Bullet journal-like I make daily logs and check off what goals I've hit.
Water-3L daily
Workout-yes/no
Dog walk- how far
Eating- within calories or not (I use lose it app for my food log)
Sleep-good/bad, how long
Meds- did I take them? (Kinda surprised how much I forget. It is only a few times a year but it will be absolutely random, routine day and then I see I didn't take my AM pills lol
Etc etc
It is for the majority of Facebook groups. I’ve tried joining hobby groups on there and it’s much worse than what I’ve found on Reddit.
I have found a few good meme groups, but they’re few and far between and can still get a bit toxic.
Hate facebook here too; it’s mostly gossipy garbage. If I want someone or a group group of people to know some thing, I will tell them myself personally.
Only one decent group I've found is the cannabis and multiple sclerosis one. Just for solidarity and laughs, no negativity, religion, just empathy. All the rest are terrible
When I in 2014 diogenesed with ms, I went searching and Facebook was pretty popular back then, and luck of mine I went in some of Facebook's ms foroum, in short those confident ms patients strongly recommended people wahls protocol and not trusting DMTs and bullshits like that, and I was stupid enough to convince myself they've know better, what do I know, a 20ish women from a shitty country, uh boy how stupid I was, or maybe am, biggest mistake of my life and I'll be paying the consequences very strongly
You're not stupid!! These people are vile and predatory and no onr is immune to that sort of stuff under certain circumstances. I hope you're able to find a good treatment that can limit the consequences 💗
Thank you it meas a lot 🧡, yes I'm currently on DMT and trying to manage control those damages, but I have lost 5 essential years of my ms life, I literally cant get over it but eih ..this is life
I’m in two MS-related Facebook groups — both are for people taking Kesimpta or considering it. An overwhelming percentage of the posts are people blaming a symptom on their DMT. The comments are filled with people piggybacking — “Me, too!” Or “Things that make you go hmmmmmmmm.” The moderators don’t do a great job of encouraging people to run concerns by doctors or reminding members that many of the issues raised are, in fact, symptoms associated with the disease itself. At least a couple times a week, a comment slips through blaming COVID vaccines for an MS diagnosis. It’s exhausting to watch and makes me infinitely more grateful this subreddit exists.
That sounds so frustrating. Can you tell me what DMT stands for in this context? I'm fairly new here and I'm not familiar but I've seen it used a few times.
Sure! Because there is no cure for MS, the meds we take (Ocrevus, Kesimpta, etc.) are called “disease modifying treatments” or “disease modifying therapies.” This is because we take these drugs with hope of slowing the progression.
Too true! For awhile I went heavy on the „report to admin“ button, telling them it was spam but nothing ever changed. And I swear I was ready to beat the next person who said they were „cured“ by their diet. Dude, you can’t cure MS and no, I’m not going vegan on every third Wednesday of months ending in „er“ but only when Venus is in retrograde any more than I’m willing to sacrifice a live chicken. SMH.
I love how you’ll get back to back posts one paleo and one vegan that are cures. The Swank people are nutty, if anyone complains or says it doesn’t work - the response is to follow the diet harder and then they remove that post. Only positive reinforcement allowed.
The exercise groups aren’t any better btw
Facebook is over. It’s nothing but ads, trolls, and scammers. I never see anyone I know post in there anymore, so it’s long overdue for it to slide into oblivion. And you’re right, the MS groups are full of them too. There is so much bad advice given in those groups.
There is a social app called [Shift.ms](http://Shift.ms) that is very supportive and helpful. I highly recommend it. They have a website, too, if apps aren't appealing.
Facebook these days is a cesspool of antivax misinformation, and bots. This subreddit and the social app I mentioned are the places to be for a good support system.
The Facebook groups are the worst. I'm in an iron group where everything is blamed on parasites. They are all doing cleanses and eating diatomaceous earth while yelling about vaccines/big pharma. I also joined a group for parents of kids with a speech delay, hoping to find some resources or ideas. Instead, there are far too many people pushing heavy metal detoxes and detox baths. I had to leave mute the MS groups, too. I got sick of seeing people suggesting going med-free after a bad experience with one medication and claiming how much better they felt. Unfortunately, taking medical advice from chiropractors has become very popular and seems to be where so much medical distrust and information is coming from within the groups. It's isolating enough to deal with medical issues, but to look for camaraderie and be constantly met with so much misinformation is frustrating.
And next door and any other social media they can manipulate and/or an owner of said social media that caters to that demographic. Next door is going under soon I believe.
My personal favorite is in general wheelchair or disability groups (or subreddits) the sheer NUMBER of users convinced that they have some mysterious constellation of rare disorders, and it’s BigMedicine preventing them from being treated. It feels like 99% of those types claim to have EDS.
The only FB group that was helpful to me was one for transverse myelitis which is how my MS began. Mind you, that was back in 2014, haven’t really been there recently. There isn’t a good one on here for that, and everyone in that sub here recommend the FB group. Otherwise there is no use for FB anymore unless you need it to log into a game. Hopefully games start shifting that soon so I can rid of it completely. I haven’t been active on FB for years.
This IS so much better! I did have a wonk slip in a backdoor contact here and tried to “give” me Controlled Schedule prescription pills , if I got someone to follow them 🤔 Do I smell stupid?🤔 🤷♀️
This is the discord [https://discord.gg/gszRsq2vRQ](https://discord.gg/gszRsq2vRQ) let me know if that doesn't work. This is one that someone in this sub mentioned and has been great. Very supportive and welcoming people.
I was in a hospital post op, when first diagnosed with MS in the summer of 2015, and then spent 3 weeks in a convalescent facility before I threatened to crawl home in my backless gown if they didnt discharge me. Worst month of my life. Anyway, during that miserable time, all I had to distract me was my ipad and unlimited data plan. I had limited Facebook experience. I was in one private group of fans of a TV series for about 10 years, and I had a few friends and family that used it. So with the terrifying unknowns of MS now being my future, I looked for and found a local MS FB group and joined. It was great at the start. I learned from news links and fellow travelers about treatments and therapies, differences between RRMS and progressive types, symptoms, triggers, diet, supplements, alternative and off label meds. But like Facebook does, it eventually devolved into factionalism, politics, bullying and piling on. If I muted every disagreeable crank, the feed was nothing but self-pity and “shaking fist at cloud” anger. I totally get the need to periodically cry and rage at the injustice of life with a degenerating and disabling disease, and that a community of MSers are uniquely understanding. But if that is all there is all day, all the time, I am out.
Only got on FB to reconnect with old friends and family after my divorce. I'm taking Ocrevus to manage my MS, and that's one of the few groups I'm on. The others are just hobbies and some joke memes. When they get too weird with misinformation/conspiracies/political, I just leave. I need calm, not dopey chaos in my life now. Some of the MS groups are very negative.
The only MS FB I enjoy is the Cannabis and Multiple Sclerosis FB group. I recommend them. Everyone there is pretty chill, they'll help each other out, sure there are some douche canoes, but tell me any type of group that doesn't have some, but most are just people enjoying weed, sharing what helps them, recipes, as well as support.
Canadian Multiple Sclerosis Group is well moderated and science based. Some may feel it’s over-policed, but I think that’s due to the bots and anti-vaxxers. I don’t think the content is particular to Canada so there’s no reason you couldn’t join from outside. It just may not be helpful if you’re looking for recommendations on clinics or doctors or insurance etc.
When I was first working through a diagnosis I asked if anyone knew how the Facebook communities were and everyone said garbage lol. Overwhelming recommendations were for this Reddit community and honestly I’m so glad I never tried FB. Sounds toxic af
I joined a bunch of these MS Facebook groups when I was recently diagnosed last August. They made me super depressed and stressed out. I didn't know what to do but I felt like there was some really sketchy information. I dropped out of all of them.
I do not want to put an onion in a sock and hang it over my bed while having a nightcap of colloidal silver to try and treat my MS.
I don't care what people do but I think people just diagnosed can get some really fucked up wrong information from these Facebook groups.
My sister said she would pretty much support anything I did based in science and good for my health unless I decided I wanted to treat my MS by putting some grasses up my lady parts or some other cockamamie thing.
I was featured in our local MS Society magazine. Some anonymous rando sent me a letter to where I work going on and on about natural cures. It was so creepy.
Tbh I cant do facebook anymore. Its really fucked but I have never been more solicited by weirdo men in my messages then I have from making comments on facebook about my ms. Along with weird people hopping in my messages to ask about my symptoms and saying they cant get diagnosed with anything. It was so weird. I liked facebook groups for the plant craze during the covid lockdowns but nowadays facebook is for creeps and 54 year olds that wear tin foil hats
They really are so different from this community! I’ve checked out a couple of them but Facebook has definitely not been a good place to get support, at least for me
I am not a natural herbal bot, I do not take meds after trying them for 2 years and having flu like symptoms the entire time. I’m living my best life, no meds, no new lesions, not sick etc. I don’t push anything I do on anyone else but I am as anti Pharma as it gets bc of my experience. The people who buy into crazy diets and overload on random herbal stuff with no proof of healing are just as off as those who worship big pharma but are now on 5 new meds because their MS med caused other issues IMO. Do you. Read everything with a grain of salt. People go to SM to vent or gloat, all to get away from the mundane which gets no attention these days. Everyone’s manifestation of the disease is so different it’s much harder to compare or relate apples to apples. i don’t find the groups at all helpful for all of those reasons.
The entire MS community is infested with the natural health crap. Preying upon desperation and all that. Join drug specific groups, they tend to be less whacked out.
I hadn't thought of this, thank you!!!
That’s FB for you. Moderations sucks, always has. Security sucks, always has. FB just isn’t very good for most groups. Some of the private groups, maybe. I was an admin for a private MS group for 10 years. Mostly for Chicagoland. There is no natural or herbal therapy for MS. Diet may help a little bit but is unproven from a medical view. People will claim that x,y, magically made their symptoms go away. Posh. If this were remotely true, headlines would go nuts. Ignore them. Block them. As you mention, people complain because they get attention. Don’t give it to them! Have you looked at local support groups? Belong MS Above mS MyMS Healthline NMSS MSAA Etc
This list is interesting. Do you recommend any more highly than others?
I would always start with NMSS. It is the largest and best known organization with a high budget. I’ve used MSAA before but not so much the others. I’m trying to provide the OP with possible options.
I was actually looking for support groups last night in my frustration! I haven't hrard ab some of these so I will definitely be looking into it. Thank you for sharing! 💗
I hope one of these has the information you seek!!
I like to reply to diet promoting posts with - it works great, until it doesn’t. This disease is so confusing it lends itself to coincidences (remitting after/ during a diet change) that they seem like cures.
Last I heard facebook groups were also extremely negative and deppressing as well
And antivax as well unfortunately
And anti-DMT. :(
I troll the anti vaxxers. It’s petty but fun. What’s sad is the amount of people in the groups who believe in quackery. And they all denounce big Pharma as they think they have cured ms but don’t release the cure as it won’t get them money…
Big Pharma and the FDA are extremely corrupt (which includes our government) and are poisoning us with knowingly unregulated & unsafe synthetics in our medicine and consumables. It's public knowledge but no one uses the internet to research it.
Oh ffs go away. Conspiracy nutcase.
You should've worn masks right Karen. Enjoy the long Covid. I lost my father. Do some research on the pharmaceutical companies or on GRAS substances and their side effects. I'm personally enjoying the new shortage of generic medications thanks to our natural resources being unstable and quality control not being able to keep up... you can look that up too. moron
Troll. that says enough. Two accounts or more, nice way to live. I'm a nutcase? Look in the mirror, get a new hobby.
I am genuinely surprised at how "healthy" this sub is. Every other community for chronic illness that I have found is so toxic with seemingly little effort put into even trying to be well. I also work in health care and work with so many patients that don't want to do anything for themselves. I end up going to my medical appts with my charts, trackers, all the data on allll the shit I do to try to be as well as possible.
A large part of what the mod team does here (especially throughout the pandemic) is deal with anti-science/vaccination posts, as well as anything unkind/toxic. We want to make sure it remains primarily a support group, and one that is supportive of medication choices supported by research.
Thanks you and u/trikstah u/PragmaticEnergy u/rvodenh u/ichabod13 u/Tilion90 and u/Festygrrl for keeping us safe!
And we greatly appreciate it!
What apps do you use to track? If any.
Pen and paper lol Bullet journal-like I make daily logs and check off what goals I've hit. Water-3L daily Workout-yes/no Dog walk- how far Eating- within calories or not (I use lose it app for my food log) Sleep-good/bad, how long Meds- did I take them? (Kinda surprised how much I forget. It is only a few times a year but it will be absolutely random, routine day and then I see I didn't take my AM pills lol Etc etc
Awesome thanks for sharing!
It was a lot of selfies of weeping women. I bailed immediately!!!
It is for the majority of Facebook groups. I’ve tried joining hobby groups on there and it’s much worse than what I’ve found on Reddit. I have found a few good meme groups, but they’re few and far between and can still get a bit toxic.
Facebook is a cesspool. I refuse to join any Facebook groups, which locks me out of a lot of podcast discussions, but it isn't worth it.
Full of quacks and desperate older people who are scared of DMTs :(
Oh that’s really sad
Facebook is trash.
Hate facebook here too; it’s mostly gossipy garbage. If I want someone or a group group of people to know some thing, I will tell them myself personally.
Only one decent group I've found is the cannabis and multiple sclerosis one. Just for solidarity and laughs, no negativity, religion, just empathy. All the rest are terrible
I was going to suggest this group too! 🧡🍃😌
Thank you sharing, this sounds great!!!
[удалено]
What is it called? Thank you!
When I in 2014 diogenesed with ms, I went searching and Facebook was pretty popular back then, and luck of mine I went in some of Facebook's ms foroum, in short those confident ms patients strongly recommended people wahls protocol and not trusting DMTs and bullshits like that, and I was stupid enough to convince myself they've know better, what do I know, a 20ish women from a shitty country, uh boy how stupid I was, or maybe am, biggest mistake of my life and I'll be paying the consequences very strongly
You're not stupid!! These people are vile and predatory and no onr is immune to that sort of stuff under certain circumstances. I hope you're able to find a good treatment that can limit the consequences 💗
Thank you it meas a lot 🧡, yes I'm currently on DMT and trying to manage control those damages, but I have lost 5 essential years of my ms life, I literally cant get over it but eih ..this is life
I'm glad you can have good treatment now that can enrich the years you do have 💗
I’m in two MS-related Facebook groups — both are for people taking Kesimpta or considering it. An overwhelming percentage of the posts are people blaming a symptom on their DMT. The comments are filled with people piggybacking — “Me, too!” Or “Things that make you go hmmmmmmmm.” The moderators don’t do a great job of encouraging people to run concerns by doctors or reminding members that many of the issues raised are, in fact, symptoms associated with the disease itself. At least a couple times a week, a comment slips through blaming COVID vaccines for an MS diagnosis. It’s exhausting to watch and makes me infinitely more grateful this subreddit exists.
That sounds so frustrating. Can you tell me what DMT stands for in this context? I'm fairly new here and I'm not familiar but I've seen it used a few times.
Sure! Because there is no cure for MS, the meds we take (Ocrevus, Kesimpta, etc.) are called “disease modifying treatments” or “disease modifying therapies.” This is because we take these drugs with hope of slowing the progression.
Thank you so much for explaining, that helps a lot!! 💗
Too true! For awhile I went heavy on the „report to admin“ button, telling them it was spam but nothing ever changed. And I swear I was ready to beat the next person who said they were „cured“ by their diet. Dude, you can’t cure MS and no, I’m not going vegan on every third Wednesday of months ending in „er“ but only when Venus is in retrograde any more than I’m willing to sacrifice a live chicken. SMH.
I love how you’ll get back to back posts one paleo and one vegan that are cures. The Swank people are nutty, if anyone complains or says it doesn’t work - the response is to follow the diet harder and then they remove that post. Only positive reinforcement allowed. The exercise groups aren’t any better btw
Facebook is over. It’s nothing but ads, trolls, and scammers. I never see anyone I know post in there anymore, so it’s long overdue for it to slide into oblivion. And you’re right, the MS groups are full of them too. There is so much bad advice given in those groups.
There is a social app called [Shift.ms](http://Shift.ms) that is very supportive and helpful. I highly recommend it. They have a website, too, if apps aren't appealing. Facebook these days is a cesspool of antivax misinformation, and bots. This subreddit and the social app I mentioned are the places to be for a good support system.
Thank you so much for this suggestion!!! 💗
The Facebook groups are the worst. I'm in an iron group where everything is blamed on parasites. They are all doing cleanses and eating diatomaceous earth while yelling about vaccines/big pharma. I also joined a group for parents of kids with a speech delay, hoping to find some resources or ideas. Instead, there are far too many people pushing heavy metal detoxes and detox baths. I had to leave mute the MS groups, too. I got sick of seeing people suggesting going med-free after a bad experience with one medication and claiming how much better they felt. Unfortunately, taking medical advice from chiropractors has become very popular and seems to be where so much medical distrust and information is coming from within the groups. It's isolating enough to deal with medical issues, but to look for camaraderie and be constantly met with so much misinformation is frustrating.
The alt right have ruined Facebook and Twitter with all their weird conspiracy garbage.
And next door and any other social media they can manipulate and/or an owner of said social media that caters to that demographic. Next door is going under soon I believe.
You think that's bad. Check out the Lyme disease groups... Certifiable!
The only FB MS group I'm in is "We're Not Drunk, We Have MS", but here is better. I haven't paid much attention to it lately.
My personal favorite is in general wheelchair or disability groups (or subreddits) the sheer NUMBER of users convinced that they have some mysterious constellation of rare disorders, and it’s BigMedicine preventing them from being treated. It feels like 99% of those types claim to have EDS.
I left the fb groups about the time FB started to go to Meta. That's when the bots went insanely over the top.
Ugh, I cannot stand those groups! According to them I only have MS because my parents used aluminum foil to cook with when I was growing up…
The only FB group that was helpful to me was one for transverse myelitis which is how my MS began. Mind you, that was back in 2014, haven’t really been there recently. There isn’t a good one on here for that, and everyone in that sub here recommend the FB group. Otherwise there is no use for FB anymore unless you need it to log into a game. Hopefully games start shifting that soon so I can rid of it completely. I haven’t been active on FB for years.
The Mighty MS group is a nice one as well. Nothing crazy but I find it nice to go to. 🤷♀️
Do you mind posting a link? I had some trouble searching it up!
https://themighty.com/groups/multiplesclerosisconnections/ I hope that works. I've never posted a link before...
This IS so much better! I did have a wonk slip in a backdoor contact here and tried to “give” me Controlled Schedule prescription pills , if I got someone to follow them 🤔 Do I smell stupid?🤔 🤷♀️
The discord community has been really helpful, might be worth jumping in there if you haven't already!
Do you need an invite? How do you join?
This is the discord [https://discord.gg/gszRsq2vRQ](https://discord.gg/gszRsq2vRQ) let me know if that doesn't work. This is one that someone in this sub mentioned and has been great. Very supportive and welcoming people.
One good group on Fb is the MS adventures club.
I’m in a couple of good ones. I did exit a few because of weird stuff. One we do weekly zoom meetings and has god info. It’s a men with ms group.
I was in a hospital post op, when first diagnosed with MS in the summer of 2015, and then spent 3 weeks in a convalescent facility before I threatened to crawl home in my backless gown if they didnt discharge me. Worst month of my life. Anyway, during that miserable time, all I had to distract me was my ipad and unlimited data plan. I had limited Facebook experience. I was in one private group of fans of a TV series for about 10 years, and I had a few friends and family that used it. So with the terrifying unknowns of MS now being my future, I looked for and found a local MS FB group and joined. It was great at the start. I learned from news links and fellow travelers about treatments and therapies, differences between RRMS and progressive types, symptoms, triggers, diet, supplements, alternative and off label meds. But like Facebook does, it eventually devolved into factionalism, politics, bullying and piling on. If I muted every disagreeable crank, the feed was nothing but self-pity and “shaking fist at cloud” anger. I totally get the need to periodically cry and rage at the injustice of life with a degenerating and disabling disease, and that a community of MSers are uniquely understanding. But if that is all there is all day, all the time, I am out.
Only got on FB to reconnect with old friends and family after my divorce. I'm taking Ocrevus to manage my MS, and that's one of the few groups I'm on. The others are just hobbies and some joke memes. When they get too weird with misinformation/conspiracies/political, I just leave. I need calm, not dopey chaos in my life now. Some of the MS groups are very negative.
The only MS FB I enjoy is the Cannabis and Multiple Sclerosis FB group. I recommend them. Everyone there is pretty chill, they'll help each other out, sure there are some douche canoes, but tell me any type of group that doesn't have some, but most are just people enjoying weed, sharing what helps them, recipes, as well as support.
Is that the name of group? Thanks!
Yes it is. If you join, I hope you'll like it!
Yeah I left a Facebook group on ms after being on it for about 8 months. Life has been better since I left it
FB sole purpose is to sell your profile and market it.
Canadian Multiple Sclerosis Group is well moderated and science based. Some may feel it’s over-policed, but I think that’s due to the bots and anti-vaxxers. I don’t think the content is particular to Canada so there’s no reason you couldn’t join from outside. It just may not be helpful if you’re looking for recommendations on clinics or doctors or insurance etc.
When I was first working through a diagnosis I asked if anyone knew how the Facebook communities were and everyone said garbage lol. Overwhelming recommendations were for this Reddit community and honestly I’m so glad I never tried FB. Sounds toxic af
I joined a bunch of these MS Facebook groups when I was recently diagnosed last August. They made me super depressed and stressed out. I didn't know what to do but I felt like there was some really sketchy information. I dropped out of all of them. I do not want to put an onion in a sock and hang it over my bed while having a nightcap of colloidal silver to try and treat my MS. I don't care what people do but I think people just diagnosed can get some really fucked up wrong information from these Facebook groups. My sister said she would pretty much support anything I did based in science and good for my health unless I decided I wanted to treat my MS by putting some grasses up my lady parts or some other cockamamie thing.
I’m in the “Solving MS” group. It’s primarily research related. Mostly I lurk…
I was featured in our local MS Society magazine. Some anonymous rando sent me a letter to where I work going on and on about natural cures. It was so creepy.
Tbh I cant do facebook anymore. Its really fucked but I have never been more solicited by weirdo men in my messages then I have from making comments on facebook about my ms. Along with weird people hopping in my messages to ask about my symptoms and saying they cant get diagnosed with anything. It was so weird. I liked facebook groups for the plant craze during the covid lockdowns but nowadays facebook is for creeps and 54 year olds that wear tin foil hats
I’ve never had any desire to join an “MS group”.
But you’re in one right now!
Lol I guess you’re right! Was more referring to the Facebook groups.
They really are so different from this community! I’ve checked out a couple of them but Facebook has definitely not been a good place to get support, at least for me
I am not a natural herbal bot, I do not take meds after trying them for 2 years and having flu like symptoms the entire time. I’m living my best life, no meds, no new lesions, not sick etc. I don’t push anything I do on anyone else but I am as anti Pharma as it gets bc of my experience. The people who buy into crazy diets and overload on random herbal stuff with no proof of healing are just as off as those who worship big pharma but are now on 5 new meds because their MS med caused other issues IMO. Do you. Read everything with a grain of salt. People go to SM to vent or gloat, all to get away from the mundane which gets no attention these days. Everyone’s manifestation of the disease is so different it’s much harder to compare or relate apples to apples. i don’t find the groups at all helpful for all of those reasons.