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There Is MS Information Everywhere, But How Should You Use It?

One of the most common terms that we like to toss around regarding Multiple Sclerosis is that it’s a “snowflake” disease,  meaning that we all tend to have different symptoms and treatments that work.  There is of course overlap, and some symptoms are more common than others, but overall, my MS is not the same as your aunt’s or your sister’s best friend’s butler’s MS.  Many of us go out of our way to talk about that, and for many of us, the worst thing someone can do is compare our MS to someone else they know with the disease (it’s right up there with saying “but you look so good”).  So if we are all so different, why are so many of us quick to listen to others about treatment?

Sorting through so much information

We live in a connected age, with the internet, smartphones, tablets, and other devices giving us 24/7 access to a massive amount of information on just about anything.  Is that a good thing though?  Is all that information accurate? Even if it is, will it help me if my disease course can be so different than others’?  This is something that I’ve been pondering for awhile now.  I write about MS and I’ve been diagnosed with it for 17 years.  I’ve grown up around MS: my grandfather who was also afflicted with the disease lived with us when I was growing up, so I’m very much in the thick of MS information.  I read whatever I can and try to stay as up to date as possible.  It can be overwhelming at times though. Sometimes I have to take a step away because there is so much out there these days!

Where do you begin?

I can’t imagine what it must be like to be newly diagnosed and have all this information at your fingertips.  Where do you even start?  How much that is out there conflicts with what your doctor is saying?  Who do you believe or trust?  It’s true, MS is a disease where there seems to be a wealth of doctors who don’t seem to be knowledgeable enough (and why one of the first things I telly newly diagnosed people is to not be afraid to switch doctors, something I wish I knew).  Does that mean the internet and social media is the answer?  I don’t think so.  I do think it can be helpful though.

“Whoa, wait a minute”, you might be saying. “Devin, you are a writer on the internet – should we not listen to you?”  Well, there is a difference.  My goal when I write is to share my experiences,  primarily so that others can read them and get some comfort from them.  If just one person reads something I wrote and says to themselves, “wow, this guy gets it” or even better, they can direct a friend or family member to it and say “this is what it’s like for me”, then I feel I’ve done well.  I know not everyone is as open and ok with sharing their lives as I am.  I also know that some people may not have the means to properly explain their issues as well.  My hope with my writing is for it to be something that people can share and say “this is what it’s like for me”.  Even more important than sharing is that I want folks who read it and have similar issues to feel a little comfort.  It may sound crazy to some, but I really do believe that there is some peace to be found when you know you aren’t the only one dealing with something.  There is comfort in knowing that you aren’t the only one, that you aren’t alone.

Everyone is different

So I talk about my experiences but I never tell people to try a certain treatment.  I never say, “go try this diet or try this medication. We’re all snowflakes right?  How could I possibly know how it would work for you?  I do, however, talk about my experiences with certain treatments and I’ll also occasionally list available options.  It’s important to know what your options are, but it’s hard for me, in good conscience, to recommend anything because I know that we are all different.  We even have a strict guideline at MultipleSclerosis.net that we do not offer or appear to offer medical advice.  One of the reasons I love working with MultipleSclerosis.net is guidelines like that.  There are also other guidelines, like requiring citations for any facts or stats we talk about.  I also know that every article I post gets reviewed by editors and fact checkers.  That’s important to me, because even though I write for them, I’m also an avid reader of our site and was long before I wrote anything of my own.

I’ve probably rambled on enough by now.  The point of all this is to remember that we are all different.  Remember that even though I say a treatment works for me, it may not for you.  The term “fake news” has been bandied about a lot lately, remember that when reading anything on the internet, including MS news and information.  Use the internet to learn about options, but don’t use it to replace your doctor.  Use it to be a part of the MS community.  Use it to explain to your friends and family what life is like for you.   Use it to get comfort and to remember you are not alone!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Juleigh
    3 years ago

    Devin, My first cousin has progressive MS and I have RRMS. He claims he has no pain with his MS and never has. He’s in a wheel chair full time now and is quite disabled. I’m still walking reasonably well, although much slower, but there are days when I feel like I’ve been hit by a bus. At times I have SERIOUS pain. Our MS is totally different. We lost an aunt to MS about 15 years ago and her MS was totally different than the two of us. The three of us share the same bloodline and we couldn’t be experiencing MS any more differently. This is one weird disease!

  • Devin Garlit moderator author
    3 years ago

    Thank you Juleigh! It really is a strange disease. I wish that more people could understand how completely different it can be from person to person. That’s something I’d like the MS Society to work on in their information. Until then, it’s a fact I try to stress and explain to whoever I can!

  • tfs
    3 years ago

    Devin: thank you for writing once again. I very much appreciate the links you provide – and your non judgmental approach. You have stated “This is what works for me.” Useful. I have PPMS and find symptoms are increasing. The explanation about MS and Marijuana used in treating these was helpful. (cannabinoids THC and CBC) I have never appreciated the side effects of marijuana, but at least I can try to be more open minded and informed. I find cognitive issues of great concern and wouldn’t even go there. If you don’t have to get stoned…. Thanks, again.

  • Devin Garlit moderator author
    3 years ago

    Thank you tfs!!! Always appreciate you reading and commenting!

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