Age at Diagnosis

[JennS77]

My 20 year old son was diagnosed this week with an aggressive case of MS. How old were you when diagnosed? His brain MRI shows about 20 lesions with another 10 on his spine. What advice can anyone give me to support him during this difficult time.

[Jesmcd2 CommunityAmbassador]

Hi JennS77 and Welcome to Our MSAA Community 😊

I am truly sorry to hear your son is on this roller coaster ride, and at such a young age. It has to be a shock for all of you.

Honestly, I think right now all you can do is listen to him? Let him become accustomed to the thought and the knowledge about it all.

There is so much to learn and take in.

How are YOU doing with it all?

Please feel free to ask anything here! Or cry! It's what we are here for!💕

Jes 🌠⛄

[JennS77 in reply to Jesmcd2]

I am in shock still. Just wish I could take his place. We are so new with the diagnosis, he hasn't been given much information at this time other than he has a lot of disease in his body and it is very aggressive.

Its just hard to see your very active 20 year old grasp this reality that he could lose his ability to be so active.

[Jesmcd2 CommunityAmbassador in reply to JennS77]

I'm sure you are in shock! And full of questions!💕 And fears!

You did say one important thing tho, Could! It doesn't mean it will, they have made great strides in DMT's for us! So Don't Ever Give Up!

~Hugs n Luvs ~

J 🌠⛄

[jackiesj in reply to Jesmcd2]

i agree just because it may say this or that may happen is not always the case.

[jimeka]

JennS77 let it sink in first before you start googling it and getting your heads filled with lots of differing opinions. With your son being so young, and if you live in the States he should be a good candidate for the new treatment Ocrevus. It doesn't matter how old you are when you get diagnosed, it is never a good time. I pray that your son can accept his diagnosis, and fight it head on. This sight is full of support and answers, please keep us informed as to how your son gets on and please feel welcome to vent, cry however you feel, we all understand, because we are either there or we have been there. Blessings Jimeka 🌈 🦋 🤗 🙏

[JennS77 in reply to jimeka]

We are staying away from google, I even skipped some support groups as they were just awful and not uplifting at all. His neuro mentioned Ocrevus and Tysabri, but we are waiting on the rest of his tests to decide what is best for him.

[jackiesj in reply to JennS77]

May be a great thing to stay away from google..Get facts first doc visit etc.take paper ask questions that is what they are paid for!The more control a patient feels in life or a doc..you don't lose the person.Love is so comforting....so good to hear.

[Iona60]

JennS77 I'm sure that your whole family must be overwhelmed. Knowing what I know now, if it were my child I would find him the very best care as quickly as possible, which would be a neurologist that specializes in MS, preferably at an MS center, or a well know medical facility like the Mayo Clinic.

Your family is in my thoughts and prayers.

[Hidden in reply to Iona60]

Ditto to that. There is a big difference in a neurologist who sees anything and everything, and an MS center where the only thing that walks through their door all day, every day is MS. Lots more MS specific resources. Take it a day at a time and know that your son and your family are not alone.

[Raingrrl]

Hi JennS77 ! I'm sorry your son was diagnosed with M.S. and an aggressive case too. I second what Iona60 said: make sure he is seeing a neurologist that specializes in MS at a minimum. It is rare for a non-MS specialist to be up-to-date on the current thinking and treatment options. You don't want to waste time with anyone who doesn't have expertise.

When I was diagnosed 18 years ago, I also had numerous brain lesions in my MRI. But my disease course has not been aggressive thus far. (Knock on wood!) So the number of lesions on an MRI is only one measure that tells the story. What's more important at the start is getting the disease under control with one of the DMT's and to treat the symptoms in order to maintain as much positive quality of life as possible. Attitude plays a role as well. My neuro says that he believes my attitude and ability to find ways to cope has helped me stay stable and as active as possible.

You will find people here with all forms of MS and a wide variety of experiences. Hang in there!

[JennS77 in reply to Raingrrl]

His Neuro is an expert in MS, and I really like him. He mentioned attitude as a factor as well.

[Raingrrl in reply to JennS77]

You are off to a good start then. I was a single Mom of a 10 year old when I started having symptoms. When I was diagnosed I knew I would have to dig deep and keep going for her sake. Failure was not an option because she was depending on me. (Her dad was and is a flake.) So...I became determined to not let M.S. get in my way of raising my child and of living well. It wasn't always easy but I've managed.

[Iona60 in reply to JennS77]

JennS77 I'm so glad that he already has an MS specialist. This will give him a jump on the game as you won't have to look and wait to find one.

[StacyHayward]

I was 20 when we started the process and 21 when officially diagnosed. I got on meds right away and believe that is largely why I’ve done so well. It’s been almost 18 years now.

[jackiesj]

JennS77 my heart goes out to you but all too familiar.I was diagnosed with 20 lesions over 12 years ago?!I don't have it on my spine as of 3 yrs ago.My ups and downs...a lot.From waking up not walking to career in clowning cause i fall and they laught...and what healthwise has gotten me as others know my heart.

Suggestions.Offer assistance but never take away ones right to control life.Learn to listen without advice or think about it first.Come here and let us love you.He also education is your buddy and so are we.Reach out good avenures of help, as a caregiver save time for yourself.Let your son know that just because he may have this it is he that you love, not feeling sorry for him.Go to MS society and read a lot.Watch out for scams, does he want you to go to the doc with him..a reassurance for me as a patient.Best wishes and love in this group!

[Linda3579]

So much great advice here. I don’t know what I can add. I am always grateful that it is me with MS and not one of my boys, so I can only imagine how sad you must feel. They are doing amazing research right now. Your son is young. I think it is very likely there will be a cure for MS in his lifetime. I, too, think attitude is really important. I think if you can stay positive that will help him. Wishing you all the best. Linda

[agate]

JennS77 , I'm sorry about your son--and of course you're feeling shocked and confused and sad. To answer the question, I was 39 when diagnosed but the neuro thought that the first MS episode probably happened when I was 20.

Some cases of MS that look aggressive at first later turn out not to be aggressive at all. There are people whose MS flares up for a while, and then it seems to stabilize or reach a plateau. And as others have said, great strides are being made in finding drugs that often help.

[ssdw1958]

I am sorry that your son has MS may I ask you how he was diagnosed what were his symptoms.

I was diagnosed in 2004 I was tripping, my right eye had blind areas and fingers were starting to be numb. The situation with me was the doctor didn’t listen to me when I said something was wrong. So I had to google it

My thoughts to you is listen to him and stand strong with him he will have good days and bad days. The best time of the day for me is the morning if he has things to do try doing them then. But remember to take care of your self because your very important to

Good luck to the both of you.

Don’t forget about the rest of your family your going to need there help don’t think you have to do it all and your son can help him self to.

[JennS77 in reply to ssdw1958]

He was feeling dizzy, having numbness and loss of vision. I was at ER with his younger sister for the flu so I told him to go get checked for flu. The nurse in ER noticed a stratumus, I think is what she called it, in his eye and requested a MRI. 4 Days later and a bunch of test we finally left the hospital with the diagnosis.

[Morllyn]

JennS77 , I was 26 when I was told that I probably had MS (1977) but in my 30’s when a doctor first said I had it for sure.

Try and live his life to the fullest, go on with his life. Check out the latest research, info., etc. on the subject, find a doctor that he trusts and follow his advise but remember, it is always up to you to decide what is best for you.

[Eleyne92]

Welcome JennS77 .

It's tough learning that a child has MS, and a severe case at that. My oldest was cc'd at age 22while in the army and within a year was out of work and in a wheelchair. We had a rough couple of years dealing with his illness and associated symptoms, including depression, as well as some non-MS struggles, but we not only managed, he's doing quite well. He drives, has his own apartment, works and has a small business. He's also a motivational speaker.

We did what we needed to do to keep his spirits up, helped with his meds and Dr appointments, and researched everything we could. Being positive and supportive goes a long way. Acknowledge that the disease May necessitate some lifestyle changes, but he creative and proactive. Ask for help if you or your son needs it. Isolation isn't beneficial. Social interaction and physical activity is.

[SlmHarris]

I was diagnosed at 42. My husband had a good friend diagnosed at 17.

The reason I said had, my husband passed away 3 1/2 yrs ago.

MS can affects all ages. We are here you and hopefully comfort you as a caregiver. A great caregiver is someone we all need

Best wishes and keep in touch!

[greaterexp]

JennS77 , I’m sorry your son and your family are dealing with this. You’ve been given wonderful advice by everyone here. I hope you will take the advice to heart.

Understanding that MS can cause a roller coaster of emotions and symptoms may help you be understanding for your son as he deals with those emotions and symptoms. I think it’s important to remember that “my MS is not your MS.” Everyone is unique in their symptoms and progression.

You must be a very supportive mom, so your son has a powerful weapon. You are all in my prayers.

[Kenu]

I was diagnosed at 39 years young. I found a great neurologist and started medication right away. I think this was the best decision I’ve made. Will be 23 years in February 2018. I was able to work for 22 years till Cancer hit. I still drive, chase, and do lots of things. I wear an AFO for drop foot and a walking stick at times. Antidepressants are a big help and keeping a good attitude are big plus. Getting a good neurologist and a regular doctor that understands are needed. Getting both on the same page for optimal care. Good luck and stay in touch, have Youre son join in. 👍🙏🙏 Ken

[JennS77 in reply to Kenu]

I haven't had him join this one yet, because I wanted to be able to discuss my fears without him. I need to be strong for him, kinda needed my own place to show I am scared for him.

[Kenu]

P.S. I was on Tysabri for seven years, it was great 👍Had to go off because of Cancer. I am on Aubigo for last year😉😍 Ken

[bxrmom]

JennS77 I'm sorry that your son was diagnosed at such a young age. I think what is best is to just listen and be there right now as there are so many up and down emotions he is experiencing he doesn't know how he is truly feeling about the diagnosis. I was 26 when I was diagnosed after my vision went blurry after dealing with stress at work.

Gentle hugs for you and your son. Please keep us updated when you can.

Jessie

[SometimesCrazy]

My prayers are with you. Just breathe and try to relax. You know you are the key to how he is going to perceive his future. The good news is that there are some great new drugs and some very promising future drugs that a lot of us didn't have when we were diagnosed So that is something very positive to hold onto! On top of that we live very full lives even without those new drugs and so can your son, xxo

[AngieRowe]

Great advise here. Stay positive. All ms is not the same and it ebbs and flows. I can tell a difference when I follow a MS diet. I would suggest you reading books on MS & MS diet and if you find a book which is positive and not depressing , let your son read. There are lots of good books out there, arm yourself with knowledge to ask questions and assist with treatment plan.

[cljones in reply to AngieRowe]

@AngieRowe What book did you find helpful in regards to diet?

[AngieRowe]

@cljomes, the book is called, MS recovery diet, by Ann sawyer, mostly it is about staying away from foods that cause inflammation. Limit or no red meats. Eat fish and chicken. Low or no fat. No sugar. Eat veggies, organic preferred.

I really do feel better when I follow but it doesn’t work for fast food days. And it doesn’t work if you are to lazy to cook (which I am most days).

It’s a catch 22, it costs you in time and physical challenges but if you stick to it at least 30 days you will feel the difference. But I find myself being a backslider.

[janetb1968]

Hi I also try not to eat too much red meat and just stick to fish turkey and chicken xxxxx