New Family

[Deb H]

I have had MS for 22 years now. Diagnosed at 19. I am married and have 2 wonderful boys (6 and 4). My sister-in-law linked me to this site and it is great to be able to meet people who understand. I live with my MS with a positive outlook and feel grateful for the activities I am able to do. Don't get me wrong, I do have my days of frustration and worry (will I be able to walk to my son's baseball game?). My family doesn't understand the illness and they like to believe all is fine in the world so this site feels very welcoming to me.
MS has mostly affected my walking - about 6 years ago. I know it was stress related and I just haven't improved since then. I am on Ampyra and that has greatly helped me. Lack of sleep, colds and flus, stress are the factors that affect me the most. But I will not allow MS to stop me from the quality of life that I want.

[KoKo]

Hi Deb H

Welcome to MS World!

I have had MS for 22 years now. Diagnosed at 19. I am married and have 2 wonderful boys (6 and 4).

Gee, you were diagnosed at a very young age.

It's nice to know that you were able to go on with your life, getting married and having children.

I live with my MS with a positive outlook and feel grateful for the activities I am able to do. Don't get me wrong, I do have my days of frustration and worry (will I be able to walk to my son's baseball game?).

Having a positive outlook and being grateful doesn't mean we won't have some frustration and worry at times - after all, we are human beings with a wide range of emotions! But having a good attitude, for the most part, feels better to us and to those around us.

My family doesn't understand the illness and they like to believe all is fine in the world so this site feels very welcoming to me.

Sometimes family and loved ones don't want us to be sick and hurt, because then they will feel bad. Denial is fairly common with those that love and care about us. Fatigue, numbness, pain, spasticity, etc. can't really be seen by others.

In any case, this is a wonderful site for information, support, and sharing experiences. We can be very real here with how we're feeling, and know that we're being understood, with no judgements.

Good luck with the Ampyra. It seems to be helping quite a few of our members. You can learn more about how some of our members are doing on it in the Medications forum.

If you have any questions, just ask and we'll be glad to help if we can.

Looking forward to seeing you around here!

Take care,
KoKo

[Leola Stotts]

Great to hear from someone who has been diagnosed that long ago and is still being so positive. That is what we need to hear. Hang in there. This is a great place to share, vent and seek answers. We are all in this together.

[skaggs27]

I was diagnosed at the age of 26 yrs old and when I think back to years before that 19 was when some symptoms started coming up, Its very hard to stay positive with a load of stress in my life so all I can do is try....

[Deb H]

I was diagnosed quickly at 19 and put on a heavy dose of steroids (ACTH). And at that time there wasn't much hope or help out there. I didn't even know what MS was. My doctor even had the nerve to tell me my dx without my parents around and then told me that I wouldn't be able to have kids. People looked at me like "ohhh, you have MS".
I had just changed colleges and lost a boyfriend and then my hair all fell out from the steroids. I remember that being my low point and asking God why this had happened to ME? My answer was that I was strong enough to handle it. Odd as it may sound but from that very moment on, I never looked back. I collected my inner strength and marched forward. I was the only one who could help myself. No one understood and no one seemed to want to hear anything about pain or problems. So, I just took it as a challenge to be stronger than MS.
I have been told that I would never walk again by a doctor. Lost most of my hair again around 24. I have had a few episodes every few years that took me down to literally crawling around my apartment. But steroids were always able to get me back up after a few weeks - months.
I just won't allow this illness to get me down. I look around and see how much I can do rather than what I can't do any longer. There are worse things out there and people who are sicker than I am.
I am doing well with my MS now and my main problem is walking. I have numbness and other symptoms but the walking is what bothers me, mentally, the most. My MS used to be "invisible" to others but now...it isn't.
I am married and had children (no problems whatsoever) - proved that one doctor wrong. The pregnancies were wonderful and I felt great. Even after, I was ok. I look at my boys and want them to learn about strength and never giving up. Also, to never judge people by what they assume.
You can't give up on yourself and this is your challenge to carry. There is so much more hope out there now than when I was dx.