Women Living with Multiple Sclerosis with Judith Lynn Nichols
WebMD Live Events Transcript
Join author, Judith Lynn Nichols, who will share her experiences living with MS and being a part of an online support group that evolved into a very special sisterhood and the book Women Living with Multiple Sclerosis .
The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Women's Moderator? Welcome to The Women's Health Place on WebMD Live. Our guest today is author Judith Lynn Nichols. She is not a neurologist or an MD, so she cannot respond specifically to your medical concerns. However, she has had MS for about thirty years and is part of a fabulous online support group of women who share many personal experiences. Judith Lynn Nichols, a former reporter and freelance writer, is the lead author of Women Living with Multiple Sclerosis, a book based on the experiences of women suffering from MS who regularly discussed their thoughts and feelings in an online support group. Welcome Judy, we are thrilled to have you here today on WebMD Live.
Judith Lynn Nichols Speaker? Hello everyone.
mariposatoo_WebMD How do you sustain your spirit during a chronic illness such as this?
Judith Lynn Nichols Speaker? Hello. I'm glad to see you?re here. I think I sustain my spirit mostly by being in touch with others and trying to do the same things on a daily basis. We help each other. I think that's where we find our spirit.
helenjtechlink2000_WebMD I am currently having an exacerbation and would like to know, as this is number 7 in 3 years, what are the differences between Avonex and Copaxone? I have an appointment with a new MS Neuro that I hope will be a little more accommodating than my current one. I have a very positive attitude most of the time and a great family, but still have so many unanswered questions. Thanks.
Judith Lynn Nichols Speaker? As far as I know, Avonex and Beta Seron are the 2 drugs that are immune system modulators. The Copaxone acts as a decoy. It sits in your system and pretends it's smiling. Therefore, when the body decides to attack itself, the hope is that it will attack the Copaxone in your system instead of the myelin in your spinal cord. It's probably best to check with your doctor, especially if you're going to a new one, to see what his opinions are on the 3 treatments. Not every one is good for every patient, so it's good to discuss which is best for you.
2fish_WebMD What are your tips on day to day coping?
Judith Lynn Nichols Speaker? Sustaining your spirit is an important part, but then we come into the day to day living. We must narrow that down so that it's minute to minute. We get through each minute the best way we know how, and we hope that the next minute will be just as easy to get through.
shiska_WebMD How were you diagnosed before the MRI?
Judith Lynn Nichols Speaker? That was mostly done by tracking symptoms for 4 years. Then when I had my first major attack, they performed a spinal tap. He did a lot of tests on my brain. With those tests, he eliminated all other possibilities. The only way to be sure was to have an autopsy and look at the spinal cord and brain. We decided not to do that. So I stayed with the probable diagnosis for 15 years, before I had an MRI that confirmed it.
marjie2_WebMD How did you form your support group?
Judith Lynn Nichols Speaker? We met on the message board for MS on AOL. After we were talking a while there, we discovered we wanted to discuss more than we could on public boards, so we formed a group with email. We send out letters to each person in the group, so we may each get 200 emails every day.
mariposatoo_WebMD Will you and your group be going on Oprah?
Judith Lynn Nichols Speaker Several people in our group have written to her several times and have never gotten an answer.
Women's Moderator For those who haven't read your book yet, what is a Flutter?
Judith Lynn Nichols Speaker? A flutter is one of the silly things everyone does, with MS or not, that seems to mean their brain is not functioning. But when we flutter, it follows a pattern. Circumstances change, etc., but we can say it has something to do with MS because we're doing it all the time. It gets to where the people around us can look at us and say "you're having an MS flutter."
mariposatoo_WebMD Does donating your body to science help a lot in MS research toward a cure?
Judith Lynn Nichols Speaker? I have made arrangements to donate my brain and spinal cord to the research center in Colorado. You can find that information online. The rest of my body will be sent to University Hospital in Cincinnati for them to do what they want with it. My main goal is to let them research MS with it.