I know exactly how you feel. My husband has benn pushing my to stay postive, and wants me to listen to the docs but when they cant agree its hard. And i have 3 small children who everyday is a struggle to be even a quarter of the mom i was. But i think you should include your children,educate them along with our self. I know the feeling its every hard to except. I hope the best for u and your family. And im pretty sure this didnt help much lol

If you are just beginning your journey to combat MS, this is a drug which has been shown to keep MS from progression, Low Dose
Naltrexone. No needles, few if any side effects, with a liquid method it is very inexpensive.

You coulds tell your children that many manage to live with ms for a very long time. For me, it is approaching 30yrs, still managing to stay on top.

Thanks for the suggestions and support. I think it bothers me more how it may impact them. I am staying positive and counting each day as a blessing.

Though I cannot take any of the CRAB drugs, I would start them as soon as possible. I was dxd in 1986. I was basically an animal as far as the things I could do - long hunting trips, built my house - you get the point. In about 1997-19958, MS came and bit me in the ars. I could no longer make my feet do anything I told them to do. Walking with a cane was a struggle. Since then, periodicaly I have lost a small percent of my physical capabilities on a regular. Do not wait until what you do have is gone before you start the fight. Once you lost it, you cannot get it back.

We told two of my daughter about my MS when they were in their early teens. At that point, I figured I would rather they heard it from me than someone else, or worry that there was something worse wrong with me. They seemed very understanding; as if they already new. Just explain that it is not a death sentence. Kids are stronger than you think. I also think they will accept it better if they only see "a little wrong with you", rather than when you are having an attack and then you must tell them. Tell them when you are having a good day, that way they will see the disease in a better light.

P.S. I too am in denial.

I agree with StevP, Kids are much stronger than we give them credit for. My 18 yr old she calls me everyday from school to check on me and my 13 yr old he asks me how am I today?

Just sit down with them and let them know whats wrong with you and explain what MS is and how there are things you can do. You feel better once you tell them and you don't feel like you are hiding some very important info from them.

I was just diagnosed in May this year and to some extent I am still in denial about it but I know I want to keep doing as long as can so I'm on Copaxone. I see and feel a difference so if being on this is what I have to do I will continue.

Continue counting your blessings, the only way to get through.

Keep your children in the loop. No only does this help them understand what's going on, it also ensures that they hear this important information from you, rather than from a well-meaning relative or friend who accidentally spills the beans.

As you may have already figured out, MS doesn't just affect one person in the family - it impacts everyone - so each family member needs to develop some kind of relationship with the illness. And open discussion is the best foundation I can think of for building comfortable relationships.

You know your children better than anyone else does. So ultimately, you're the one who needs to decide what's best for them and for the family. Kids of all ages are pretty quick to pick up on what's happening around them. If you're tense, worried, or upset, chances are that your children are clued into it right away. Even if they don't quite know why you're upset, they sense your mood and interpret it as best they can. This means that without informiton from you, their imaginations will take over, and the problems they imagine are likely to be even more frightening than whatever the reality happens to be.

Now you have the opportunity to model for your kids how people help one another deal with life's challenges. Children who see that it's okay to talk openly within the family about problems that arise are much more likely to come to you when they hit snags along the way.

Nothing is more reassuring for your children than knowing that you have a good doctor who's working with you to treat your MS in the best possible way. Also, don't worry about keeping your treatments and medications a secret. When you share info about your treatments, your kids feel more confident that you're in charge and that your illness is under control.

The National MS Society offers a lot of good resources to help you explain MS to your children. Here's one for you: When a Parent Has MS: A Teenager's Guide www.nationalmssociety.org/teenguide

It will be okay...

wow....im so glad you posted this today...my m.s. was in remission for so long(the really bad attacks)..that my kids 9 and 11 didnt know i had it...they found out when i fell out of a chair and had to crawl to my room and climb up on my bed(low to ground)...my daughter had to bring me my phone ...at 10 at nite i called my 27 yr old daughter,told her my m.s. had flared and i was paralyzed...she came and got my scared and crying kids....dont wait till you have bad things going on to tell them....i had to sit mine down and explain it all when that attack eased up....they know it wont kill me but now that they know,it doesnt scare them when i fall,drop things,get severe charley horses where i cant straighten my leg or hand or arm....we laugh at these things and i say "damn m.s."...the kids say"mom dont say bad words"....but i guess my point is,tell them all about it,i sent off for booklets age appriate for them and it explains everything....i pray for you to be ok with accepting this dx...i know you dont want it..none of us do but you know you have us here for you
hugs
amy

Thank you all so much for sharing, I will check out the resources. I really needed to hear what all of you were saying. I thought about joining this support group for a while. I feel like I am making the right decision now to start medication now instead of waiting. I also talked to my neurologist today who is very patient with me and my constant questions of are you sure its not something else. I know I should consider myself lucky that it has been caught in the very early stages. Your stories have really touched me and have helped to ease the anxiety I have been having about telling my children I have MS. It is reassuring to have people to talk to that understand and have been where I now am. You are truly and amazing group.
CW

I am so sorry. IT SUCKS. Telling my parents and my 10 yr old was the worst. I guess what I would say about your kids, is that to remember you are setting an example for them. That is the ONLY way I am making it through this........ be honest with your kids about the disease, but SHOW them that you can and will deal with this disease and you will not let it change your life........ With that being said, they will be much more able to handle the seriousness of this disease 10 years down the road than they will be able to now. Hang in there and I'll be praying for you!

Amy

I just wanted to add thta our youngest has always known me as having MS. We had told the other two kids about my MS when she was a toddler. She knows me no othr way and she has had no problems with it. Just don't dwell on it every day of your/their life.

Well, I contacted my neuro yesterday and he put in my prescription for Copaxone which is at the pharmacy already. I didnt think it would move this quickly. The next step is for me to actually tell the kids, pick up the meds and wait for the training. My neuro said someone from the company would contact me and train me on the medication. Im a little nervous about starting, even though my husband reassured me that we are doing the right thing by fighting this thing. No the less, Im staying positive and taking on step at a time.

I had the same issue with denial, I was dx 5 years ago this month when I went blind, I took the treatment for a while, the lost my insurance which was a good excuse for me to go right back to "they were wrong and I am fine" which worked for about a year. I didn't tell my kids (10 and 5 years old) I figure being I was okay, and they were wrong that there was no reason too. Then this July the MS came back very aggressively. Seems that year, maybe year and a half off my meds was causing damage that my denial made worse. I ignored the numbness, the pins and needles, and the vision problems, blaming them on a very physically demanding over night job. "must be the tiredness, the work, the long hours....ect" In July I had to go to the hospital because I thought I had a stroke, the day after my 30th birthday. I couldn't see, couldn't speak, couldn't walk, couldn't feel the right side of my body. The dr did a CT, said we are sending you to a bigger hospital, we think you have a massive brain tumor. It was the MS. It had caused "the largest plaque" they had seen. Along with brain swelling, I spent a week admitted to the hospital and finally had to tell my kids what was wrong. I went through the national MS society and ordered them a book on it to help me open the discussion. I think it is better now that they know. It took alot off of me trying to keep up and pushing myself when I was having a bad day, or making excuses on why I couldn't keep up. They both handled the news well after reading that this is not a death sentence, and that just because I have it doesn't mean they will get it too. I was very rudely taken out of my happy denial and since July have had to face that they weren't wrong. I am still trying to accept it but have gone back on treatment. I started Copaxone in the end of July and compared to the Betaseron I was on years ago its much more tolerable, other than I hate needles, my fiance does all the shots for me. The nurse came out and showed us how to do it, and the shared solutions people have been great to ask questions to any time of day or night, they have even called me a few times to check on how I am doing. I am happy that you started treatment. I wish I had never gone off as I have allowed damage to be caused that they say is probably permanent, I still can't feel the right side of my body, I can't see correctly, and if I am tired I studder and can't make my mouth say the words that are in my head. It's a daily struggle but staying positive and allowing others to know what is going on, not hiding it, has really helped me.

Hugs

I'm wishing you the best CW2008. The nurse that comes out to house is very open and supportive (at least mine was) and they take their time to talk with you and expalain the injections. I was so comfortable with my nurse and she didn't mind that my kids sat and watched and learned with me the process of giving myself the injection.

What I like best about this company is that they have their own nurse line to call if you have questions or just need some reassuring. They even have a nurse that will call you to check in on you unless you don't want that.

Wishing you well!

hi , sorry that you are going thru this. i would start treatment right away, copaxone sounds like a good place to start, i would definitely tell your children, sometimes it is suprising how supportive and strong they can be! good luck :)

Tell them they know I'm sure my girls are 18 and 15 both were mad for not telling them sooner they said " we're not stupid it makes it worse when you keep things from us"
I'm sure they'll be the same really
take care