Daughter with MS
Posted: Mon Jul 16, 2012 9:34 am
Hi there, My 36 year old daughter was dx'ed with ms 9 years ago while pregnant with my granddaughter. She may have had it for an unknown length of time before that. She has also had type 1 diabetes since she was six years old. Although her neurologist isn't very forthcoming, we believe she has secondary progressive ms. For the first 5 years she would have episodes of weakness, loss of balance, pain ,etc. with periods of near normalcy in between. Over the last 4 years, however, the symptoms have gotten progressively worse with no remissions. All of this, of course, exacerbated by the diabetes. She's at the point now where she's barely able to walk with the aid of a cane. She's also in pain almost constantly, extremely depressed, and has mood swings like you wouldn't believe. Well, since this is an MS forum, I guess you would believe. Since she was diagnosed she's been on Betaseron, Avonex, Copaxone, Tisabri and now Gilenya in that order and none of them seem to offer any relief. She's convinced that the neurologist is using her as a guinea pig. It's getting increasingly more stressful at home. My wife and I are both in our sixties and between taking care of her and trying to raise our 8 year old granddaughter we're not coping too well. Add to the soup that my granddaughter was dx'ed a year and a half ago with type one diabetes and you can get some idea of what our lives are all about. My daughter certainly needs counseling and maybe we do too. Anyone have any ideas as to where we can go for help? Another question I have, is my granddaughter at risk for MS in the future and if so, when should she start to be screened and how often. Aside from our ages, my wife and I each have problems of our own. She has a cervical stenosis and spinal arthritis which is slowly getting worse and I have degenerative osteoarthritis in both hips and Hashimoto's thyroiditis. We really could use some advise on how to cope. Thanks for listening.