My #1 Advice For The Newly Diagnosed

My #1 Advice For The Newly Diagnosed

As someone who writes about Multiple Sclerosis, I frequently find myself talking to people that are either newly diagnosed or just looking for some sort of advice on what they should be doing.  I’m often approached on social media with questions and I’m always happy to talk and answer whatever I can.  When I was diagnosed, social media really wasn’t a big thing yet.  So if I had questions or even needed to vent, my options were either to talk to my doctor or try to find an in-person support group (where everyone would seemingly be 20 years older than me).  Not having that access to people and information back then really makes me appreciate what the MS community has now, and it’s a big reason why I’m happy to talk to anyone that wants to.  I also feel that after fighting the good fight for 17 years and also growing up with a grandfather who had MS, I can put my experience to good use.  One of the most common things I’m asked is “What’s your number one piece of advice for someone with MS?”  To me, that’s actually a simple one:  Advocate for yourself enough that you find the right doctor!

MS is different for everyone

Giving advice on MS is a tricky thing.  I’ve written before how I think there are a lot of people giving specific tips to others on everything from what medication to try, to what yoga pose to do, even what type of salad to eat.  Most are well intentioned (though there has certainly been an increase in fame seekers) and are simply trying to help out their fellow MS Warrior by expanding upon what works for them.  That’s great, until it become specific advice about your body and what to do with it.  We must remember that we are all snowflakes and the disease is very different for all of us.  My number piece of advice isn’t hampered by that though.  Snowflakes or not, this applies to all of us.  Every single one of us is entitled to quality care for our MS, but none of us will get it unless we fight for it.

An MS specialist can make a big difference

I have encountered so many people that have asked me how I treat my MS, or deal with my pain, or deal with my cognitive issues, or any of the other symptoms I suffer from.  While I am happy to talk about that, I often ask them what their doctor has said and so often they say that what their doctor doesn’t believe, or doesn’t know what to do, or is doing everything he can, or some other way of phrasing that their doctor simply isn’t helping them.  That is something I can’t understand.  Your MS specialist (and you need a specialist, not a family doctor, not even a regular general neurologist, not having a doctor who specializes in the disease is a huge mistake people make) should be able to help you.  If your doctor can’t help you, you need to find a new one!

MS is not very common

Always remember that just because they are a doctor, doesn’t mean they know it all.  In fact, when it comes to Multiple Sclerosis, most don’t seem to know very much at all.  If your mechanic couldn’t get your car running right, you’d take your car to a different mechanic right?  You owe your body more than your car!  So yes, I do kind of think of doctors as mechanics, they’re mechanics for the body (if you’ve ever had a really good mechanic, then you know that’s not an insult at all!).  MS is pretty uncommon in the grand scheme of diseases out there.  It also certainly doesn’t get the notoriety of other diseases, so fewer doctors are well-versed in it.  Just like not all mechanics might be able to work on a particular fancy imported sports car.  They can probably work on a few things, but they aren’t going to know every nuance that might make a difference and get it running smoothly.

Staying on top of the latest and greatest

We also live in an era where new treatments are coming out all the time.  It really is a good time to have MS (if there ever is one) because there is great research happening right now, and there are new treatments on the horizon.  All the more reason you need a true MS specialist to be your doctor!  You need someone who is invested in the disease, who is always reading up on what’s new and what’s in the pipeline.  But, if you have an MS specialist and you are still having problems, you still need to be ready to switch to a different one.  I once had a specialist tearfully say that he’d done all he could do.  Well, I found a new doctor who recommended a medication that my previous doctor never mentioned and it helped me dramatically. So remember that even all MS specialists are not equal.

So I’ve rambled on a bit, but my big advice is to keep searching for a new doctor if you are having issues.  Keep believing that there is help out there, that you have to find it, that you can find it, and most importantly that you deserve to find it.  You have to be willing to fight for yourself and do your own legwork in finding the right doctor.  It’s not easy, insurance companies can make it hell.  I’ve also heard horror stories from friends in countries with socialized medicine and their difficulty in switching doctors.  No matter where you are, finding the right doctor isn’t easy, but it’s the most important thing you can do for yourself.  You owe yourself the best care possible, now go fight for it!

Devin

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

View Comments (7)
  • Julie
    2 years ago

    I worry about the newly diagnosed when they are looking at the internet and say “well this article said if I do this, I could be cured”. It sounds good to the newly diagnosed. Who wants this diagnoses? There are plenty of traps for the newbies to fall for but I think that is the case for any disease. I have trouble thinking of anyone more low than trying to get money out of the ill.

    It’s even difficult to find a good support group online. I’ve seen a few that offer everything but support. I was lucky 16 years ago when I came across a group that was the right fit for me. A little sarcastic a lot funny and all supportive. A bunch of us have even taken vacations together. Nothing like vacationing with a bunch of MS’ers. Who else will understand when you say you can’t go out touring that day?

    And finally, the Dr really does make a big difference. I’ve been thru 6 or 7. I’m not a difficult patient, I just get irritated by some Drs I have had. So find a good support, and a good Dr. You don’t have to let MS make you miserable when you have these things!

  • Devin Garlit moderator author
    2 years ago

    Thank you Julie! I agree with all of that! It can be super daunting to be newly diagnosed. There are so many people out there trying to tell them what they should do, and many do not have their best interests in mind. So, so many online groups these days too. That said, I’ve met some amazing folks online through MS, and there’s nothing quite like talking with someone who actually gets it! Thanks so much for reading and sharing your thoughts, always appreciated!

  • Dimitri
    2 years ago

    This goes against everything I was taught as a child. “The doctor knows best”. It’s kinda troubling when maybe the doctor doesn’t have all of the answers. Like when I asked by family doctor if she could test me for the JCV. She had no idea what I was talking about and said she had never ordered such a test. Apparently I put too much faith in doctors. It seems like every couple years I have some sort of seizures. I had one last week where I passesed out and completely blacked out. When I called neurologist to tell her she tells me that seizures aren’t necessarily caused by ms. Then just this week there are reports that people with ms are 3 to 6 times more likely to experience seizures.

    I truly wish there was a play book for ms. This disease is so random. Just when you think that you know ms it changes the rules and throws something different your way.

  • Devin Garlit moderator author
    2 years ago

    Dimitri, I totally agree! It’s very much against everything I learned growing up. It’s a shame that not all doctor’s are as up to speed as they maybe should be. It’s not all their fault, our disease has been making breakthroughs, so there is so much new information coming out all the time. Overall that’s a good thing, but I seem to talk to more and more people who have doctors that have very old knowledge about MS!

  • Meagan Heidelberg moderator
    2 years ago

    You’re so right, Dimitri. I always grew up with that phrase, “the doctor knows best”, too. It’s hard to think otherwise! But I love Devin’s advice that you have to advocate for yourself enough that you find the right doctor for you!
    Please know you’re not alone. We appreciate you commenting and being a part of our community!
    Meagan, MultipleSclerosis.net Team Member

  • Matt Allen G
    2 years ago

    I agree that self-advocacy is probably the most important thing; if you know what is possible to achieve you are less likely to settle for what doctor #1 has to offer. I love the mechanic analogy, I am going to start using that because it PERFECTLY describes why you should keep looking for a new neurologist/second opinion if you are not happy with the “results” you are initially getting!

  • Devin Garlit moderator author
    2 years ago

    Thanks Matt!!! I see it so often, people will stick with a doctor and for no good reason. There is help out there, but you have to find it!

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