Worried

[Fab5mom]

Hello everyone. I joined this group because my 17 year old son has MS. Could anyone guve us some advice? It has relapsed 3 times already. He feels so tired after being released from the hospital a couple days ago

[Juleigh21]

I’m so very sorry to hear about your son! My best advice would be to research who the best neurologist are to treat MS in your area. You might have to be open to a drive. Start reading about DMTs to try to stop the progression of this disease. If your doc recommends an aggressive med, research it. Most meds have Facebook groups. Who better to learn about certain meds than people currently on them. And if you need a second or third opinion- get it. Good luck and God Bless🙏

[Fab5mom in reply to Juleigh21]

Thank you so much. I am currently looking for another neurologist for him becaus ethe one he has said that since he will be 18 soon I have to find him another one. God bless you all that have it. I'm just glad he's no longer in the wheelchair or using a cane.

[Kenu]

The best thing to do is getting a neurologist that specializes in MS. Also a regular pcp that is familiar with MS and get them on the same page. My neurologist, pcp, and pain doctor are in contact with each other and I feel this helps a lot 👍 Don’t know if he is on a DMT 🤷🏼‍♂️ , but get him on one to slow down the progression. This is a life long disease and sooner you start the better off in long run is my belief 👍. Also get in touch with “my MSAA.org/“ or 1-800-532-7667 and get him a personal nurse to help called “One on One” and they can help lead you and him through this 🙏😉 Ken 🐾🐾

[Fab5mom in reply to Kenu]

Thank you so much. I'm not sure what DMT is but I will find out.

[greaterexp in reply to Fab5mom]

DMT stands for Disease Modifying Treatment. The vast majority of us are on one, but his neurologist would be a good help in choosing the best one for his age, medical history, etc. It is really helpful to look at the options and come up with questions for the new neurologist when he sees him or her.

He is blessed to have a mom who is so supportive and looking out for him.

I’m sure he needs lots of rest after this last relapse, but it may be helpful to ask about physical therapy for strength and balance help.

Stay in touch and let us know you both are getting along. MS affects the whole family, as you know, and we want to support you both.

[Fab5mom in reply to greaterexp]

Thank you so much. I will be sure to stay in touch everyone has been such a big help. I try my best to keep his spirits up. Being so young and going through this has to be tough. He got diagnosed when he was 15. They first thought it was a stroke. I try to educate myself and him. I'm looking for a new neurologists and hopefully they will be better than the last one.

[greaterexp in reply to Fab5mom]

You’re a terrific advocate, and we all need that, especially when we are young and don’t know the ropes.

[mrsmike9 in reply to Fab5mom]

Don't give up if the first med. isn't right for him. My 3rd one was for me and I've done pretty well on it.

[Fab5mom in reply to mrsmike9]

Thank you. I'm not giving up on him or finding the right doctor. I tell him all the time we are in this together

[Jazzihorsecat]

Fab5mom, sorry bout your son but yes I do have some advice for ya!😉 I was just diagnosed(DX'd) last year & I became my very own doctor so to speak, w/ all the true research, I was Blessed to stumble across Ann Boroch's 2 books or ebooks," Healing Multiple Sclerosis", & "The Candida Cure", the best 2 books I have read in my life, saved mine & 1,000's of others lives! W/ RRMS(Remitting Relapsing MS & even SPMS(Secondary Progressive MS, PPMS (Primary Progressive MS & the like! Started the diet last November & Am feeling so much better, don't need to be a human guinea pig, or human pun cushion💊💉@all!!😍😂👍 well, do your research, but this seems to be 1 awesome management of M.S...Blessings💐Jazzy🌹💜

[Fab5mom in reply to Jazzihorsecat]

Thank you. I am now starting to do research because I know the 💉 is painful for him and they don't want to give him any 💊 just yet. I will definitely check out the books you suggested. Everyone has been so helpful.

[mrsmike9 in reply to Fab5mom]

Did they tell you why they didn't want to treat him yet? Sounds a bit crazy to me.

[Fab5mom in reply to mrsmike9]

They have him taken a shot called glatiramer. They said that they have to wait until he's 18 for him to be able to take the pill. They told me that most people with MS find out around 20 years of age. This is why I'm currently looking for another neurologist for him

[mrsmike9 in reply to Fab5mom]

To me that sounds like, well your loved one has...say, glaucoma. We won't do anything until he's 18, even though it will get worse while we're waiting. It just doesn't make sense!

[pamgarner]

welcome mom,there is sooo much info out there,I have been diagnosed 6 years ago and I still am learning things,you are correct,the best place to start is a good neurologist and good general dr to work together.let us know what is going on with him and how he is doing.

[Elizt3]

Welcome! I’m sorry you have so much on your plate. As others have said good neurologist who are you can communicate with is an important part of your sons care. Neurologists might not talk about how important good sleep, nutrition, exercise, and stress management are. All those factors can make a difference in how many symptoms we feel. Best wishes.

[DIsneyQueen]

Hi Fab5mom, and you are fabulous! As others have already said, find a neurologist who specializes in MS. Your son needs aggressive treatment while he is young and newly diagnosed. There are many new treatments out there and lots of hope. Keep us posted. You are in my prayers.

[Weldon60]

I have been fortunate in that I have not had a lot of relapses, but I have had some. I am usually tired a lot after relapses and it does require a lot of rest, even after recovering from a relapse. The last relapse I had was while I was doing my doctorate and having to take my toughest classes. I was not getting enough rest and the relapse cause me to not to be able to write a proper sentence or to speak a proper sentences when under stress. Fortunately, my professor understood and allowed me more time to complete the course. It has almost 20 years since my last relapse, but I still allow a good bit of time rest. Often in the afternoon and then go to bed about 9:00-9:30 every evening.

I wish you son well.

[tnolan2006]

A good intro to MS: msbrainhealth.org/report

Good videos on this channel: youtube.com/channel/UCkQopi...

[Fab5mom in reply to tnolan2006]

Thank you so much

[sashaming1]

Get a neurologist that specializes in MS and begin a DMT ASAP.

[kdali]

I feel for you! The helplessness of having a sick child 😭🥊

There are a few other moms here, so please stay in touch. One has a 14 year old daughter on Ocrevus infusions, I believe.

As far as my advice on the post relapse exhaustion? It’s not good advice for a child and plenty here would argue that it’s not good advice for anyone, but here’s what helped me; boat loads of caffeine, a drug called amantadine (my MD doesn’t do the other uppers my friends here are privy to, and they cause headaches anyway), and taking the keto diet so seriously that I maintained fasting blood levels around 3. And lots of rest, meditation, and sunshine.

Lots of love to you!!

[Fab5mom in reply to kdali]

Thank you so much. I really appreciate everyone's advice

[errolsweet53]

I'm new to multiple sclerosis,,,I do 15 per day on a exercise bike and 40 sit ups...I feel great...drink plenty of water,,watch your diet,,eat only fresh foods..stay healthy and feel productive,,you will feel a whole change of dealing with ms..

[Fab5mom in reply to errolsweet53]

Thank you. But trying to get a teenager to eat fresh foods is a challenge especially when they are away at culinary school