Feeling totally lost

By eman

1 min read

My daughter just diagnosed with MS last month next day to her birthday day, she is only 15 years old and the doctors said she was having MS 2 or 3 years ago but we didn't notice her, I don't know how she will survive with this disease, her future will she go to college or not? Will she get married????
I am totally lost and I feel that the happiness has disappeared from my life forever, I wish I had this disease instead of her. She is still very young and was extremely active girl before having her first noticed attack. I want to know if someone has same experience in this age and what is the situation will be after many years??

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Meagan Heidelberg Moderator
Hi Eman, We are so incredibly sorry to hear of your daughter's diagnosis of Multiple Sclerosis. We appreciate you commenting and requesting for further support. We have many informational articles on our website, but here is one article we have on newly diagnosed MS'ers; <a href='https://multiplesclerosis.net/living-with-ms/advice-for-newly-diagnosed-from-someone-who-cares' target='_blank'>https://multiplesclerosis.net/living-with-ms/advice-for-newly-diagnosed-from-someone-who-cares/</a>. It is extremely hard to say how fast this will progress, as every case is similar, but extremely different at the same time. Here is another wonderful article on dealing/coping with the diagnosis - as this is equally important for you to know; <a href='https://multiplesclerosis.net/living-with-ms/dealing-with-ms-diagnosis' target='_blank'>https://multiplesclerosis.net/living-with-ms/dealing-with-ms-diagnosis/</a>. We want you to know that your daughter is not alone on her MS journey. Please feel free to search through our articles to find anything that may relate to you and/or your daughter. Again, we are so sorry to hear of your daughter. We are thinking of you, Meagan, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member
katea Member
I'm sorry you're both going through this. Please continue to reach out for help and do everything you can to educate you and your daughter about this disease. Ask her doctor about any support groups for people her age. Don't be afraid to ask for anything and everything you need. I would like to say to you that plans for the future are a great thing. Many people with MS go to college, have careers, get married, have babies, etc. I am 60 years old, have MS, and go to the YMCA 5 days a week to walk, take water aerobics, lift weights and have fun! Yes, there are times when I can't because symptoms keep me from it, but I keep going. If you can, try and get some counselling for the two of you so you can find some good ways of coping with this news and moving forward. Best of everything to you and your family.
1smartgirl Member
My first memories of Relapsing and Remitting MS began at about age 9; I just turned 60! I was not diagnosed until age 50, which means I had not taken medication for MS whatsoever prior to 50. Prior to diagnosis, I suffered with pain and weird symptoms (feet feeling nailed to the ground, etc.) for years. To answer some of your questions, yes, she can have a very normal life, filled with joy, and all of the things others with "normal" lives have, without any of life's activities prematurely bringing an end to her life. I completed both bachelor and masters degrees from a very highly rated college, graduating Magna Cum Laude. I have been married (twice) have two grown sons, both brilliant and motivated young men, with neither having disease symptoms; they have children, and their children are all enjoying healthy lives as well. I have made a conscious effort to never sit around waiting for "the other shoe to hit the floor" (old saying which means to me: uh, oh, what is that a symptom of!)I watch my diet, and I take vitamins religiously. I keep active, have been a runner, have belonged to a gym, owned several homes of my own, shoveled snow, mowed the lawn with a push-mower, and held an extremely demanding job, and have had a meaningful career, where I helped many people to also have good lives filled with hope and purpose. Your daughter is fortunate to have been diagnosed early in life, perhaps she will never know debilitation, or pain; perhaps there may even be a cure before she gets too much older! Please stay positive, and do your best to help your daughter focus on life outside of her having MS, and work hard to help her not to allow her life to be defined and limited by Multiple Sclerosis. Talk this over with her. This won't be easy, but if you want your daughter to have a good life, Multiple Sclerosis must, someday soon, become a small thing in your daughter's Very Large, Very Beautiful, Very Wonderful, and Very Eventful Life! The alternative is to allow MS to take over every thought you both have and every breath you will both breath for the rest of your natural lives, doing so would surely crush even the strongest soul. Don't let it happen, you have to be strong, start today! Be determined to live your lives, make the medical testing, the treatments, and all the stuff of ms to not be the center of your or your daughter's lives, focus your thoughts, and your actions on the more important stuff of life. Make plans, help her set interesting and fun goals for her life, and teach her how to work toward making her dreams come true-such as choosing a college-begin by checking out every college on her list to see the kinds of support is available there for her if she needs it. Most large colleges have medical clinics which can be of great assistance to their students (tutoring, life skills, living arrangements, transportation, etc.), and they will bend over backwards to help her be successful. How do I know this? I was employed for 27 years in Higher Education, and it was my pleasure to work with some of the most wonderful employees and the kindest professors on the face of the planet! Your journey is just beginning! You get to choose-Make Life Big-or allow MS to overwhelm both of you and take away every hope for happiness you both will ever have. I chose the Big Life, and SO CAN YOU! Here's a Huge P.S. for you both-avoid quack-cures, do insist your daughter always take her prescribed medication as directed-some people are frightened by the medications, but the alternative to taking the medicine could be really bad. One PhD Educated woman even wrote a book about how she "cured herself" of MS, which has been discredited in academic circles, as she began taking alternative medications not mentioned in her book, and now she is on a steep and steady decline. There someday may be a cure, but for now, there are some great medications which help. Good Luck!
1. eman Member
 Thanks for your reply , it was really helpful
kunakid Member
I was also 15 yrs. old when I got MS, I'm now 53. Having MS is scary but you can still have a wonderful life. I went to college and got a degree, I’ve been married to my husband for almost 30 years and we have two awesome sons (now adults). I’ve been living with MS for 38 years, MS is a roller coaster, good days and bad days. I was diagnosed before medications but was on Avonex for a little while in the 90s, while on it my attacks were getting stronger and closer leaving permanent physical damage. I decided to start eating healthy and started feeling better so I quit Avonex and haven’t had an MS attack since. Unfortunately, now my feet & mouth are always numb and about 6-7 yrs ago I went through some extreme stress that set me back and now my walking is a little more difficult but I’m still walking! I do know what you mean by wishing you could have this disease instead of your daughter, our youngest was diagnosed with Type 1 Diabetes at 16 yrs old and it was hard watching him struggle. There is a (I forget but I believe) 504 section, which protects students from discrimination, check with the school nurse. It’s not just for physically disabled but for those who struggle with brain fog, incontinence or whatever, my son used this many times to leave class & rush to the bathroom or to check his blood sugar without getting into trouble, he also got help with a tutor. She can also take this with her to college, just let them know. Your daughter needs to always put herself first by taking care of herself, avoid stress (very important), eat healthy, exercise and never stop moving. You both need to stay positive and education yourselves, for me MS has made me appreciate life a lot more. Good luck!
1. eman Member
 Thanks , hope we can see a real medicine to cure in our life time
cchuys Member
I was 15 when diagnosed and am now 18 years old. I know that every case of MS is different, however, I wanted to comment on here to maybe give you a piece of mind and some hope! Like I said, I was diagnosed at 15 years old as a sophomore in high school. It was really tough to go through, especially because high school can be hard enough as it is, not including a chronic disease. However, with the help of my amazing friends, family and teachers I was able to pull through and will be graduating on time with academic honors this June. I have been able to manage my MS very well and have had only one relapse since my initial diagnosis in 2013. I plan on going to college, and I have I am doing so well with my MS right now that I am actually going away to college. This is a big deal, at least for me, because when I was initially diagnosed I feared that I would have to be dependent on my family and wouldn’t be able to go away to college like I wanted. The college I am going to is only 2 hours away, so it is perfect because if I did need to get home, it would be an easy and quick trip. I'm obviously not married or anything, but dating was a big issue because I was always scared to even date after my diagnosis because the last thing I wanted to do was to date a guy & then him be scared away by this disease. I just dreaded having some talk with a guy and having to inform him about my MS. However,it was just a short 6 months ago that I learned how feeling that way was not right. I say this because even though my parents & everyone told me over and over again that "the right boy would come along and accept me", I often didn't believe them. However, I am now dating a guy who does just that. And contrary to what I told myself, he knows about my MS and accepts it & me. The best part was, is that a mutual friend told him about my MS before me and him had met, and with knowing that about me, he still wanted to get to know me, despite this disease, and now we have been dating for about 6 months. I know it is just a "high school relationship", & may not being super serious, but in high school relationships are sometimes a big deal so I hope your daughter does not get too caught up in thinking the way I did, because the right guy will indeed come along. In high school I did get the 504 plan and my parents and I met with my teachers and school counselors to inform them of my condition and what I needed to make things easier. And I am carrying that over to my college as well so it is very beneficial and I definitely recommend getting information about the 504 section. As being the 15 years old who was diagnosed, I will admit how terrifying it was. However, looking at everything now, almost 3 years after my diagnosis, I can reassure you that a normal life full of joy and, happiness and normal teenage things is very possible. There will be adjustments, like managing symptoms and medications, but MS can’t stand in her way! 😀 I will agree with the others who have said it already that your daughter needs to always remember to put herself first and to be her own best advocate, because she is the only one who knows how she feels. Also stress is a huge trigger for me, so avoiding a lot of stress is important, because in the end (I have learned) it only does harm, and no good. Staying positive is also something I learned how to do because of my diagnosis. On my "bad days" I always try to think of at least 2 things that were good within that day and then to be thankful for those things, no matter how small they were. Stay informed and never be intimidated/scared to ask questions, and remember that neither of you are alone in this! If your daughter ever needs anyone to talk to that is around her age, you can contact me. I wish you both well!
1. eman Member
 Many thanks for your reply dear ,hope to get well very soon with my daughter also I would like to know some information regarding your case if possible, which medicine you started with in this age and what is the doctor said to you about the escalation when you get older , also if possible how many lesions you had and severity of the case ? , last thing what was your first symptoms and the first attack ?? Thanks again dear
casey27 Member
I was also diagnosed at 15 and I'm 27 now. I won't sugar coat it, having MS can definitely be very challenging. Getting through high school was very rough for me personally. My walking was affected, my writing was affected(I'm sure that made grading my homework fun for my teachers haha) but I persevered and graduated. Afterwords I got a part time job and went to college. Right after finishing college I experienced a major relapse. The only way I could walk was if someone was holding on to me and I had to take baby steps. My doctor did not think I would bounce back from that but again I persevered, I just continued going about my days the best that I could and ultimately I got back to my regular self! As of now my condition has downgraded a bit in the way that I use a cane to help me walk but other then that my life is very decent. It's hard to say what your daughters life will be like down the road. All MS cases are different. But focus on now. Don't stress over next month or next year or 5 to 10 years from now. Just take things one day at a time. And the most important thing for your daughter to do right now is to stay positive about things. That in itself can make a world of difference! I know it has for me! Best wishes!