Dear OCW and your daughter:
I have had MS for years, was diagnosed in 1994 when Betaseron was first available.
I had several bouts of Optic Neuritis in 1990 and '91, so actually, they could have diagnosed me earlier.
They waited until there was a disease modifying drug, I guess to molify the HMO), and have been on several different therapies:
I was on Betaseron for several years, can't even remember if it was five or four now, and always had injection site reactions.
Was on Copaxone for about a year until I was put on Novantrone for the full three years (that is all you are allowed).
Went on Rebif for a few months, until Tysabri was available.
Had two infusions of Tysabri in 1995, January and February, until it was pulled.
Have been doing Copaxone until this date, and now am fighting to get my HMO to allow my doctor to prescribe me Tysabri again.
Every time I have to do injections, I have injection site reactions. Every injectible has left me with concave areas on my legs, arms, belly, and hips. I look like the moonscape. I feel like I am covered with potholes. It is disheartening, yes, but my symptoms have been relieved, and my MRI's show that my disease is somewhat stable.
In fact, when my neurologist saw my MRI after the Novantrone therapy was over, she told me it looked similar to the MRI which I had taken three years BEFORE I began the Novantrone therapy; in other words, I had improved!
And Novantrone was only giving to me once every three months, as an in office infusion. Of course, it is chemotherapy, my hair thinned, and I felt sick as a dog for about ten days afterward.
And I can never do it again, since it is cardio-toxic.
Once you join the ranks of the MS'ers, once you have an incurable disease, you just have to roll with the punches, so to speak.
But, IF your daughter has good medical care, a good and informative neurologist, and takes care of her health in general, she should be proud of herself, and she should look at her personal journey and personal triumphs, because that is where she will find her inspiration and her strength.
It sounds to me as if you are both doing what you can. I certainly feel empathy with you, both as an ms patient and as a mother. My daughter is thirteen, and I can't imagine how I would be able to cope with it if she had MS as well! But she is stronger that I give her credit for, as she often has shown me.
My heart and love go out to you both,