Forum

Young & Recently Diagnosed: How to move forward?

Hey guys,

I’m Niko, 23. My disease onset was 12/16 and I was diagnosed with RRMS in 01/18.

I’ve had a total of 7 relapses which have left me permanently with 3 quite mild symptoms. The right side of my body is slightly worse coordinated, I have double vision when looking extremely far to the right and my bladder sometimes needs 2 visits to the bathroom to empty completely.

Yesterday I started using MS medication called Tecfidera. I did not start the medication right away after the dx because I was in denial and feeling really bad about my situation. At first it seemed that my MS could be progressive in nature + I had a lesion in my spinal cord. Some of the doctors were pretty iffy about it but I was broken. Now things are looking up though. It has been confirmed that my MS is indeed RRMS and that I just happened to have a set of symptoms that really threw off the doctors. Im so relieved.

All in all I’m in a pretty good state of mind given my recent RRMS confirmation. Part of me feels like I’ve been saved, but I know RRMS can be just as disabling as PPMS. I’ve been really down for the past 2 years and I’m so ready to start living my life again. I’m just scared that if I let myself think that I’m fine now I might drop pretty hard if my MS turns out to be some what active/disabling/aggressive…

Do you have any tips for me moving forward? How should I set my mind up? I guess my MS is pretty mild because they accidentally even thought it to be the onset of slow PPMS rather than RRMS. Also I only have 2 lesions. I know this is stupid to ask but am I going to be ok? What can I expect? Sorry for the long post. I guess I’m just trying to get some perspective. Thanks!

niko

you have just been given a different label for it.

what you have lost is the ability to stay positive.

LET yourself feel fine whilst you can.

yea it’s a Barsteward diagnosis but you are still you.

ms doesn’t have to define you.

all you need is to rewind to where you were before the RRMS diagnosis (which is a comparatively good one).

don’t dwell on it all.

carole x

Agree with Catwoman, its only the label that has changed. Call it what you want. Mines is, as per Denny Crane in Boston Legal, “The Mad Cow”.

Hi Niko

Unfortunately, we can’t predict how MS will affect any of us, regardless of the label we put on it. Some people with PPMS have a gentle progression and others more rapid. Equally, some people with RRMS have few and relatively mild relapses, while others have the big bang type that leaves them more disabled.

You are doing the right thing by taking Tecfidera. Hopefully it will prevent relapses for a good long time into the future. And you will stay fit and well. And it it turns out that your disease is more aggressive, then the doctors will be able to throw some bigger munitions (ie drugs) at the beast.

What I would urge you to do is exercise, either with a physiotherapists help, or alone. The stronger your core muscles, the better you will cope with any relapses.

If you were to treat this year as your year of diagnosis, you would still be feeling all of the emotions of the newly diagnosed. And a change from PP to RR is almost like having a new diagnosis altogether. You will still be feeling the sadness and almost grief of your changed perspective on life. But eventually you will perhaps get to just feel altogether angry about it. Some of us still feel furiously angry that life chose to give me this absolute sod of a disease. And I’ve had it for nearly 22 years.

Don’t be in a hurry to ‘accept’, or ‘come to terms’ with it. Just learn to readjust your thinking to make sure you make the best of your life irrespective of bloody MS.

Sue

Thank you so much for all the great replies, you’ve been really helpful :slight_smile: