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).
Putting my experience to good use
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 becomes 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. So often they say that their doctor doesn’t believe them, 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. It's just like how 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 MS research
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.
There is help out there
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!
How do you feel before getting an MRI done?