How do you live your life with Multiple Sclerosis?

I was diagnosed with MS in December of 04. I am 23 and you could say that I am still in denile (some what). I have a 5 year old son and a husband that is just trying to deal with everything. I am currently having my 16th round of Solumedrol treatments and I can't take it anymore. Just when I felt that I had this under control I get another attack. When I get these attacks my son gets very defiant, needy, and very whiny. My husbands seems to work more hours and I am left to deal with it all. I can't hold down a job I never seem to get to the 90 day quota where they can't fire me or "let me go" before I have an attack and need to get my 3-7 days of treatment. I am not on any shots for the ms anymore because I was getting horrible side effects from the meds (yes even copaxone) I learned that some of my meds that I was taking were to help the side effects of other meds. In Feb 2007 I decided enough is enough and went off everything. I didn't relapse for almost 1 year.

So I didn't relapse for a year. I had an eptopic pregnancy in that year and I just can't seem to get better. I thought that being chemically free would be better I felt soooooo much better but the doctors felt differently. I just don't feel like I have been given the chance to live a life. And I know that my son is suffering or I feel like I am neglecting him. How do I live my life and not feel so blah all the time?

I am 31 & married to a fantastic guy, and we have two little girls (ages 4 and almost 3), and they are the reasons I try so hard to go on with everything.

I am not a doctor, but 16 rounds of solumedrol is A LOT of steroids, especially at your age and in such a short amount of time. Have your doctors let you know about the possible side effects of longterm steroid use? If not, please ask them about the risks and maybe google it for your own info.

Have you tried Tysabri yet? It's a once a month infusion, and may be a good option since you didn't tolerate the side effects of the ABCRs. If your MS is getting aggressive, perhaps your doctor will suggest Novantrone (chemo). It's an aggressive treatment that has it's own serious risks, but it can also be a very effective treatment in some cases. I myself had several doses in 2006 and it helped stabilize me. Like I said before though, it has some serious risks that need to be considered though.

Do you see a regular neurologist, or do you go to a specialist at an MS Center? Oftentimes, an MS specialist can really make a difference in management of this disease.

There are also several promising clinical trials going on right now, if you are interested in considering that route. You can find them by going to www.clinicaltrials.gov and using the search terms "multiple sclerosis" and your state.

As far as your son's behavior goes - have you explained to him about your MS? He is old enough to understand the basics that you're sick, and he is plenty old enough to be helping around the house. My 4yr old knows that I'm in a wheelchair because my legs no longer work, and she knows that my disease is called "MS", though she obviously doesn't understand the depth of it. Both she and her little sister help a lot around the house by picking up all their toys, they do some small cleaning tasks (weird, I know!!! but they love playing with the broom, and they love to dust so I am enjoying it while it lasts!!), they throw things in the garbage for me, straighten up their rooms, etc.

It's getting a little harder to keep them occupied as they're getting older, especially since I am homebound. But I'm hoping that when they go to preschool next year, they will be more content when they're at home.

Hang in there and don't give up! And please know that others are in the same boat as you. Also, please consider trying to get onto a treatment of some sort. They aren't perfect by any means, and they don't work for everyone, but they are the only things so far that have been proven in clinical trials to help slow down the progression of this disease.

I was Dx'd with MS last year, my MS has been with me for a while before the Dx. Welcome to Blah. With the meds, they are blah also, but they do help *in theory*. I do know what you mean by the injections causing other problems, as I now have allergies, and bad arthritis. I feel that the meds will help, as there is NO alternative. Hope your Blah doesn't cramp your style for years to come.