Search Discussions

Main Content

  • nerij

    I cant stop thinking about the future of MS. Especially what my life in the future will look like. With medication I am able to feel from the waist down to my toes and walk, run, etc. I know without some of my daily meds, the numbness/tingling comes back. How long do I have until I lose something else? It really sucks not knowing what is going to happen next. This is where we are all sappossed to have faith our medication will really keep us relapse free. I am just scared, is anyone else scared? Any advice? Thoughts?

    I was newly diagnosed in July. So I am still new to this whole life with MS.




  • jeannef1

    Hi Jen,

    I was worried for the first 5 years,too. Symptoms would come and symptoms would go but nothing that horrible ever ruined my life. I am still the same person with the same worries and dreams I had before MS. You said "it really sucks not knowing what is going to happen next".Even if you don't have MS you don't know what will happen next,so there really is nothing good that comes from worrying about it. I had many friends who were very upset when I was diagnosed who have passed away from cancer or accidents. Just enjoy the life you have and make the best of every moment you are enjoying! You have a very beautiful smile!


  • nerij

    Thank you so much Jeanne! That is a good way to think of it!

  • MS_Navigator_Steven


    This is Steve with the National MS Society.  

    Managing this unpredictable disease is certainly difficult and everyone handles it in their own way.  I just wanted to provide you some information and let you know that the National MS Society is here to help in any way.  I have included a link below which will take you to general information for someone with a new diagnosis.  I also wanted to invite you to contact our Information Center.  We can be reached at 1-800-344-48678.  We would be happy to let you know about any programs, services, or resources that would be beneficial.  Take care and we hope to hear from you!

    Take care,


  • tallgal
    No one knows what tomorrow has in store for them. Everyone has their plans and sometimes they go exactly as you planned and sometimes they go perfectly wrong at every turn, as if you were out of sorts with the whole universe. Everyone tries to peer into the future and " see " what is coming. When we anticipate good things we are often over the top in our imaginations and when we anticipate bad things, we are often over the top in our imaginations. So far in my life, both the most profound, most wonderful and the worst and most traumatic moments weren't anything like I thought they would be. Some of them, I didn't even see coming. Yes, I get scared and unlike when I was a child this MonSter does exist, it really can " get " me. I get scared when my daughter is late coming home too... I can imagine all kinds of awfulness and feel all of that awfulness. All my worry and fear spares me nothing... as a matter of fact, it depletes my energy and makes me less able to cope with the "worst", should it happen. When I really look at it... twenty years down the road, if I am pretty much the same as now, I will regret all of the time spent worrying and all of the trauma I made myself feel... twenty years down the road, if I am completely messed up, the worst that I can imagine, I will regret all of the time wasted worrying and all the extra trauma I made myself feel. Either way, I want to make the most of today that I possibly can, I want to do the most with my time that I can, look back on my life with satisfaction, not regret. When you look at the future, remember that today is the path there and make it count as much as you can. Wishing you strength and peace today and everyday on your journey.
  • nerij

    Thank you! That is very true and I will start to think that way! It'll be better for my health in the end, well atleast my mind!


  • Beastlysoul

    I'm scared as well. I just turned 21 in March 2015 and I was diagnosed in Janurary. I don't know how to deal with it emotionally. I don't know how I could look forward to my future, my hopes and my dreams when...I have to worry about a possible MS attack.

  • jeannef1

    Beastlysoul wrote:

    I'm scared as well. I just turned 21 in March 2015 and I was diagnosed in Janurary. I don't know how to deal with it emotionally. I don't know how I could look forward to my future, my hopes and my dreams when...I have to worry about a possible MS attack.

    What if all the young people between the ages of 21 and 35 found each other online and collaborated to write a book on the challenges of having a chronic disease at such a young age? You could discuss your problems with others who understand what you're feeling ,while making new friends and learning from each other. I have never seen a book specifically about the obstacles young adults face such as dating,school,family relationships,respect from doctors,etc. You could be very useful to others,even neurologist who don't understand the special needs of chronically ill people just beginning their lives. I'm sure there would be no shortage of useful material daily!

  • nerij

    It is a scary diagnosis to have! But, we are all here for eachother! I was pretty depressed with the diagnosis and may still be, but I just handle it differently now. when I get scared or sad I will talk with my friends, family, or boyfriend and they help me stay positive!

    No one is fighting this battle alone!

  • Noontide

    Nervous, scared, depressed, etc. Yep most if not all of us go through this once we get diagnosed. Heck I went through some bad times of "there is no future why bother" attitude. My recomendation is to understand the future is uncertain with or without MS. Try to keep living life to the fullest. If physically able keep doing whatever it was you did for fun and if unable to do that find something else to keep you entertained/busy. There is lots out there. I'm getting close to 30 years with the MS cloud over my head and keep as busy as possible.

  • dwillings

    They way I've looked at my dianosis is that MS is what I make it. If I have a negative attitude then MS will greatly effect my life and my lifestyle. However I have decided to remain positive and I will not let this disease control my life. No one knows what each of our futures hold, but what positive outcome do you get from worrying? Good luck to you as you move forward!

  • rneal0278

    Hi Jen,

         I'm Ryan.  When I was 16 that's when I really had my first problem with MS. Now I'm a week short of my 37th birthday. I didn't get  diagnosed  tell 2013 and been fighting thing since 1995. 

    I didn't have good insurance at the time, but with all this time I had other problems. At age of 23. My hands, feet and Ed happen all at once. No one knew what was going on. I was very scared. I knew it was MS cause the dr told me when I was 16 it could be ms or it could be a one time thing and that I wouldn't know tell about 7 years if it was ms. 

    7 years went by, and that's when my body started changing. Well as time went by I just got use to it. Then when I was 34 working graveyard shift at the casino my knees went numb. That's when the  neurologist diagnosed me with MS. He also said I could work still. And I did for 8 more months tell one day I got home from work and got out of my truck and my legs  collapsed while I was getting out of my truck. So I ended up in the hospital for a week and my job said they could only hold my  position  For only a month. So they let me go. Then I filed for SSDI cause I worked. Took 8 months to get it with a lawyer. I was happy about that. But now it's kind of hard to make ends meet. 

    We never can tell what is going on or what will happen. I just live everyday cause I never know what will happen. 

    Just hold your head up and keep faith and I wish you the best.