A Few Thoughts for the Newly Diagnosed

By Matt Allen G

4 min read

So I was reading an article in a magazine about multiple sclerosis (I won’t say which magazine) that talked about coping with MS if you are newly diagnosed. I finished reading it and all I could think was “wow, that was really weak and uninformative” which then got me to thinking “What do I have to say to people who are newly diagnosed with MS?”, because frankly that article really sucked haha… So, if you were just diagnosed with MS or if you think you might have it but have not got an answer from your doctor yet and are just browsing the internet reading all sorts of stuff that is just making you more worried let me tell you just a few things I think are really important for you to know.

First, I want to tell you that just because it can be really bad for some people does not mean it is that bad for all people. MS affects everyone a little differently so you can’t read one person’s story and think it will be your own. Most people with MS are not in a wheelchair, do not use a cane and do not need that little motorized shopping cart/scooter thing so stop freaking out about that. Most people with MS live pretty ordinary lives so most of them obviously do not have a blog or YouTube channel because… what would they really talk about? If all I did was go to work, stop at Starbucks and pay my bills I would not be much of a writer would I?

Secondly, you need to realize that there are way moremedications available today than there was even just 5 years ago! I think there were only about 6 (or so) medications available when I was diagnosed in 2010 which were all given by injection or infusion but now there are about 13 medications, many of which are a simple pill and there are still several more being developed or in the approval process right this second! Now, I am not saying that there is ever a GREAT time to be diagnosed with MS but if you had to be diagnosed than right now is probably the better time because there are so many options for treating MS right now and so many new options being worked on! It’s getting to the point where I can only imagine that when someone is now diagnosed and treated right away that their disease progression should not be all that bad (keyword should) thanks to what we now know and the new treatments available to us. So, my point is, you should rest a bit easier knowing that there are many forms of treatment available today that were not available just a few years ago and the right treatment should allow you to live a pretty normal life doing all the thing you wanted to do.

The world of MS is rapidly evolving and not just because of scientific/medical breakthroughs. We live in the era of the internet; the world is interconnected in such a way that information is just a few clicks away and instant communication with anyone anywhere in the world is as simple as clicking “post comment” or “send”. We are “lucky” for this because it is so easy for us to connect with others instead of feeling so alone as many people did before social media. The fact that you are sitting down reading this right now is proof of this! 10 years ago I would not have really been able to share my story or speak to the MS community like I can today.

This leads me to what I personally believe is one of the most important pieces of advice I can give you; knowledge is power. We as people naturally fear what we do not understand so most would say one of the best things you can do is learn everything you can about MS! From the day I was diagnosed till today I have done everything I can to educate myself about MS because that gives me more power over this disease than it has over me. Sure, it’s great to read from actual books or attend speaking events but that is probably a little over the top for the average individual who is newly diagnosed with MS. Thanks to the internet you can learn about pretty much anything so learning about what MS is, how it works, how it’s treated, how it affects people and advice on treating/living with MS is incredibly easy. By learning all you can you can make sure that you can make an informed decision about your health so that MS is not dictating your life but instead you are dictating the role MS plays in it.

What advice do you have for people who are just diagnosed with MS or think they may have it? On the flip side, what advice are you seeking if you are new to MS? Share or ask in the comments below!

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joanee Member
Thanks for this. I wish I had read it years ago!!
1. Matt Allen G Moderator & Contributor
 Wish I could have known all this when I was diagnosed (instead of slowly learning it for myself) as well!
wendella Member
I was diagnosed in 2010 and am amazed at all that has changed even since then. Today, many strides have taken place in research, MRI technology and in development of new medications which make it easier to get started right away with curbing future exacerbations. It used to be they wouldn't consider a diagnosis of MS until a documentation of two separate & distinct episodes of symptoms for at least 24 hours which were separated by one or more months, but as I understand it, they are now changing some of these requirements due to better diagnostic tools. In my case, it was several years between my first and second exacerbation. Maybe if they had started me on an MS disease modification drug (DMD) after the first episode, the second one might have never occurred or been less extreme. In any event, today one's options have multiplied. There's obviously never a good time to get MS, but I can say it's a good time for treatment if you ARE diagnosed. Keep the faith and learn all you can!
mascha Member
I am not newly diagnosed and still find your story comforting. I was diagnosed in 2012 and basicaly been told to ignore it. Saw a new neurologist in Amsterdam and he was great. My first real conversation with a MS neurologist. And as you said getting information about your disease keeps you ahead. Due to my research i knew i had RRMS and that the French were stuck in their old way being diagnosed as inactive. As i thought it does nit exist anymore. My reason i went to VUMC Amsterdam last week. Great article. Your last article made me seek help elsewhere,thanks!!!!
1. Matt Allen G Moderator & Contributor
 Well I am glad to hear that you are taking initiative because a doctor who tells you to just ignore it is not a DOCTOR, they just get paid like a doctor because doctors are supposed to help you fix a problem not ignore it...
tracyshudo Member
Well what I have to say is close to what others have said. First when I got ill I have vertigo. Most of us even if we don’t have MS know what that is, your head is spinning and your mind is kind of foggy and you can’t walk really well. My family Drs kept saying I had an inner ear infection. Then on week 2 they asked are you having numbness anywhere on your body? I say no. They say well go home and we will see you in a week. I could not drive so my husband was and I told him what the Drs asked. He said you have that all the time. Ever since I met you. "4 years" I SAID I DO NOT! Well 2 days later I am lying on the couch and all of a sudden a part of my right arm went numb. Not because I was laying on it. So I turned to my husband and said your right. So off to the Dr on Monday with new information. They sent me right away to the hospital calling before I arrived and telling them not me why they were sending me. First Dr we saw said to me well someone your age with these issues we look at 3 things the inner ear infection, brain tumour or M.S. OK My world just came to a massive stop, I knew I did not want to have the brain tumor, as I had a 3 year old son. Well we waited for the all mighty Neurologist I was resting in a bed in a quite space. This was 23 years ago when hospitals were not so over booked. Mighty Neurologist can in to the room 11/2 hours after other Dr that scared me and he was looking at the chart and said to me, So are you falling down? I said no but everything is so spinney I have to walk close to the wall and touch it with my hand. (Anyone else been there? I know more than a few that are saying yup) Well this special Dr looked at me with the utmost disrespect and said I have patient's that are way sicker than you, Go home. Well I was still ill and was scared I had a brain tumour in my head and no one was doing anything about it. Well that’s when the girl that does not take the word "No" well at all got on the phone and said to this Dr well I want that thing you called an MRI. Little did I know there was a 6 month wait on getting one. I called the hospital after 2 weeks and said I live really close I can’t work so if you have a cancelation I can be there in 10 minutes. The wonderful nurse said let me have a look at your file; she said oh this is not a long MRI so why don’t you come in on Tuesday? That was 3 days away!!! If you don’t ask in a nice way they can’t say yes or even no. So ask questions to get answerers. Yes I had MS not the dreaded brain tumour. BUT in 1995 23 years ago there was basically no treatment for MS. But like Wendy has said there is SO MUCH MORE TREATMENT OUT THERE!!!My best advice to anyone that is newly diagnosed is a few things, don’t but your head in the sand and just forget about it. Because if you do not start to listen really close to your own body it will make you fall down just to teach you a lesson. NEXT get a Neurologist that works in a clinic work only or mostly on MS. And all Dr are not the same, change if you don’t like the one you got. A cane is a tool but at 33 I knew I needed one for some days but god forbid it be a metal one that an 80 or 90 year old uses I now collect then and they are all different and find of cool. Last but not least learn to say NO!!! It took me 2 years to do that and I had relapse after relapse. Don’t let negative energy around you, it pulls you down. Do what you can when you can with a smile on your face. Sorry if this was too long. Heads up they are finding more and more things every day to help.