hi there, was recently diagnosed with MS. I was experiencing some textbook symptoms and after an mri, the doctor told me it was MS, then they just sent me home with a steroid. I am only 28 (with a newborn baby.) I see a neurologist tomorrow. But what I am looking for, and hoping I can get is some help in the form of stories....positive stories that can empower me. Stories letting me know my life isn’t over ...that I can lead a long, full, happy life. Please share your experiences with me. How old you were when diagnosed? How often do your symptoms ‘flare up’ I need supper so bad. Thank you so much In advance.
How are you feeling? I’m newly diagnosed working on getting myself on copaxone. I have 3 little ones. I am basically symptom free. Just an abnormal mri. I’m looking into a second opinion too. That being said I have no advice. Just checking in on you. There’s a ton here with little ones. You are not alone. Just focus on your new bundle of joy. The time goes fast. The rest will fall into place.
Why copaxone and not another DMT? There is the issue of cost with the US health care "system" of course, but there are other DMT drugs that are much more effective.
Or are you and your neurologist following the "escalation theory
" of treating the disease?
I am basically symptom free.
Good! That's the way you want to keep it and that's the whole point of the DMT idea of treating the disease. Every "lesion" you get is literally brain damage that may never heal or will take a very long time to heal. Thus, the idea is to get on the best DMT to prevent future episodes of brain damage.
FWIW, I recently posted a message in this thread/post
that has a bunch of links to info on DMTs and other issues that you may find useful.
@golgotha ... I’m not sure why copaxone .. the doc was a weirdo. I got a new doc appt on Friday. I chose copaxone it had the least side effects. I don’t know... what would you suggest? I only have an abnormal brain scan. Everything else is good. Even the spinal tap. I’m the impitamy of health - just my heads effed up. Lol prolly was always that way. 😂
I was also diagnosed at the age of 28. I also thought my life was over. As time passed, however, I got new-found strength through my faith. I used to see my having MS as a curse, but it wasn't long before I started to see that it's a blessing in disguise. It's normal to feel angry, frustrated, sad, powerless, hopeless after getting the news that you have MS. It doesn't mean you're weak or that God isn't with you. He is always there; He not only knows what you're feeling, but He feels it too. Lean on Him; He is your Rock, your refuge, your peace. He will comfort you. Everyone's story in life is different. Sometimes we cross paths with others when we share in the same circumstances. Even then, however, now that you have MS like the rest of us here, everyone's MS is different. It is still a different MS journey for you. Know that it does get better. Your life is not over. You will find your new normal. Some things that have helped me are seeking The Most High, being grateful for what I do have that MS has not taken away, continuing hobbies and interests that bring me joy and help me stay calm, and having a positive outlook on life. I now have the time to see the beauty all around me; to fully immerse myself in it and enjoy it. I go outside to sit in the sun. I close my eyes to listen to the birds chirp and sing. I watch the sunset knowing that every sunset since the creation of the earth is unique. I smell the flowers and watch the butterflies hovering over and on them. I have honestly become a better person as a result of my MS. Getting MS has forced me to slow down and realize what's really important in life. I appreciate this break in what was previously a busy hectic life to now a more peaceful joyful life. Yes there are still some rough days, but I am now able to handle them with greater ease. I will leave you with my favorite scripture, "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will direct your paths." Proverbs 3:5-6
I was diagnosed and had a major, extended MS attack when I was a year younger than you are.
At that time I was working at a software company, married with 4 elementary aged and pre-school aged kids. That was 30+ years ago. Since that butt-kicking first MS attack I earned 4 college degrees, worked at a variety of jobs on 3 continents, accumulating a lot of fun and life along the way, of course.
So what I'm saying is that there is life after diagnosis. :)
As to your future, no one can tell. MS is very highly individualistic.
Rather than type it out again, I recently posted a message in this thread/post
to another newly diagnosed MSer and that post has a bunch of links to info. I think you'll find clicking on that link and reading it worth your time.
Read your story and life is not over. Let me tell you about my story. At the age of 52, I was diagnosed with this disease. I had a constant tingling in my right knee and I did not know what was going in. Went to several doctors and they could not find out what was wrong with me. One of the doctors recommended me going to a Physical Therapist...that was my saving grace. My therapist watched me every day limping into the center and said to me one day "I see that this is not going to help you but I know of someone who can." He gave me a card to a Neurologist and I called him the next day.....best card that I could ever get. When I went to visit the Neurologist he said "We are going to find out what is wrong with you. Words I have been longing to hear. He sent me to get an MRI and they saw the "MS" symptoms. Now I have infusions every 6 months and I take Amprya every 12 hours. So yes you can live a long and happy life but treatment is necessary and taking your medications. I also take Vitamin D which is vital to the "MS." I am still working but walking a long distance is not good for me. My job knows that I have "MS" and everyone could not be more supportive of me. My suggestion to you to go to group therapy sessions (I am going to my first meeting this Saturday). If you have trouble walking, get your doctor to apply for a handicap sticker for your car (I have one). And don't have shame.....you will be surprised about how people are willing to help you get through this journey.
Keep the faith and stay strong.
Your "MS" friend for life,