Women Living with Multiple Sclerosis with Judith Lynn Nichols

Last Editorial Review: 10/23/2003

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.

kimfye_WebMD Is a flutter like memory loss and time loss?

Judith Lynn Nichols Speaker? It is to a certain extent. It is usually something that happens quickly, like not remembering someone you know well for 10 seconds. Everyone says we all go through this even without MS, but with us it happens over and over.

2fish_WebMD I have only had MS for about 3 years (I'm only 30). Thank you so much for writing your book! Will you be writing more?

Judith Lynn Nichols Speaker Thank you for your appreciation of the book. Yes, I am in the process of writing a sequel. I hope to have the manuscript finished on time to have it on the shelves in September 2000. It will be with the same publisher.

mariposatoo_WebMD Does MS affect your senses of taste, touch, smell, hearing, and sight?

Judith Lynn Nichols Speaker? Yes, it does. Most people start out with some loss of sight. Optic neuritis is very common, and that can be to where you actually go blind temporarily or on a long-term basis. There is often facial numbness which can affect taste, smell, and hearing, and of course numbness in the hands which greatly affects the sense of touch.

tink1960_WebMD Will this book be similar to the other? I loved that one!

Judith Lynn Nichols Speaker? Hi Tink. Yes, it will be similar. A lot of the same people will contribute, plus a few more. The emphasis though will be how we overcome the obstacles that come with MS as we live everyday.

kimfye_WebMD My main problem is horrible chronic back pain. My doctors say it?s from the way I walk due to my MS. Are there other women out there with this problem?

Judith Lynn Nichols Speaker Yes, there are. The fact you can't walk normally all the time can put added stress on your bones and muscles, and also the soft tissue areas, which can cause a lot of pain. Also, a lot of people with MS also have Fibromyalgia. This can be a very painful condition and cause a lot of back pain. If you're having a lot of pain, please discuss it with your doctor because there are ways to control it.

2fish_WebMD Is there any news on meds? Are you aware of the Pacitaxel research?

Judith Lynn Nichols Speaker ?No, I?m not aware of that. I've heard lately that Provigil is good for fatigue in MS. I understand that people using that are satisfied. I know there are other more dramatic treatments on the way to being approved. There are people participating in studies for oral Copaxone, which is a big step forward. That would mean we wouldn't have to do the injections every day.

mariposatoo_WebMD Is the outlook for someone relatively newly diagnosed brighter than for someone with thirty years of history?

Judith Lynn Nichols Speaker? In general, I don't think there's anyway to predict that because the whole outlook is so unpredictable for each person. But if we talk about specifics, it's that the three drugs (the Avonex, the Beta Seron, and the Copaxone) are being used very soon after diagnosis, and are proven to slow progression of the disease. So someone recently diagnosed who gets on one of those medications, has a much brighter outlook for the course of their disease than someone who hasn't had that advantage.

2fish_WebMD What is the difference between MS and Fibromyalgia?

Judith Lynn Nichols Speaker? As you know, MS is a neurological disease based in the brain and spinal cord. As far as I know, the origin of Fibromyalgia has not been traced yet. Its main symptom is pain. There are trigger points in the neck, back and shoulders that set off the pain. The latest research indicates that there is an involvement in the brain, that the pain center in the brain doesn't work right, so it interprets certain triggers as pain that is not appropriate for that trigger under normal circumstances. Fibromyalgia is probably as mysterious in its own right as MS is in its.

shiska_WebMD Getting back to "MS flutter"? can it also cause your emotions to "see-saw" within a single day?

Judith Lynn Nichols Speaker? I don't know if that would be a flutter, but certainly MS can cause a roller coaster of emotional responses, I think partly due to the fact that it's hard to live with. Also, if the brain is sending out mixed up signals, sometimes it sends out inappropriate emotional responses too.

mariposatoo_WebMD Have you found that doctors have become more sensitive to MS implications over the years?

Judith Lynn Nichols Speaker? From my own experiences, I would say so. My first neurologist treated me like I had something mentally wrong even when he diagnosed MS. Another one after that was more realistic, but still not very understanding. The one I have now is understanding on an emotional level and on a medical level, so if he's any indication of the trend, then I would say yes, doctors have become more understanding of MS.

Women's Moderator? Finding a neurologist that one can really relate to seems to be a major challenge for many MSers. Do you have words of wisdom for someone newly diagnosed?

Judith Lynn Nichols Speaker? The first thing is to be comfortable with the doctor. If you're not comfortable with the 1st visit, try to get a second opinion. We will discuss this in the 2nd book, and ask doctors what we as patients can do to establish a good relationship with their neurologist.

tobytrack_WebMD Why do most people with MS have Fibromyalgia? I have been diagnosed with both.

Judith Lynn Nichols Speaker? I don't know the answer to that. It just seems to be a common trend. I don't know the statistics on that, but I hope the connection will be made in enough time that there will be more research to indicate why this is happening with people with MS.

2fish_WebMD What are your views on natural or alternative medicine and MS? I have found quite a few that help like vitamins and massage therapy.

Judith Lynn Nichols Speaker? My opinion is that if you find something you're sure won't hurt you in any way, and if it makes you feel better and cope better, use it. It's best to check with your doctor and let him know all the supplements and alternative meds you're using.

kimfye_WebMD This is Kim?s husband. Is there anything that I can do to make this easier to live with for my wife?

Judith Lynn Nichols Speaker? I think you've started already, just by asking if there's anything you can do. That means you're willing to support Kim in whatever she has to go through. That's the best thing you can do. I wish my husband was here right now to tell you what he has done for the past 30 years.

mariposatoo_WebMD Do you find that doctors adequately address sexual issues and MS?

Judith Lynn Nichols Speaker No, I don't. I think the main problem is that people with MS don't feel comfortable discussing sexual issues with a neurologist. As far as I know, any neurologist is willing to discuss it or refer you to someone who will. With people having problems, there are solutions, so don't be afraid to ask your neurologist or gynecologist or any other professional qualified to help you with something like that.

mariposatoo_WebMD Is nutrition an important concern in the MS patient?


What Is Multiple Sclerosis? MS Symptoms, Causes, Diagnosis See Slideshow

Judith Lynn Nichols Speaker? I think it is, even if only in the sense of keeping as fit as possible. It will probably make us better able to cope with MS symptoms. I don't know of anything specific that we should eat or stay away from, but there is a lot of info available through organizations like the National MS Society.

Women's Moderator? We are nearing the end of our discussion with author Judith Lynn Nichols. Please ask your final questions at this time.

tobytrack_WebMD Heat is bad for MS but good for FMS. Is there anything I can do to help with both?

Judith Lynn Nichols Speaker? I guess I can address the issue of heat and MS. My neurologist has told me that anything that raises body temperature can cause an increase in symptoms, and also permanent damage if the heat is extensive. Stay in air conditioning, out of the sun, drink cold fluids, do whatever you can to stay cool because it's important.

mariposatoo_WebMD How do insurance companies seem to treat MS requirements?

Judith Lynn Nichols Speaker? The biggest problem I think with insurance companies is going to the ABC drugs. Most insurance companies won't pay for treatment with one of those drugs unless you have a positive MRI. That can be a problem because in the early stages, the MRI can be negative but the disease present. Therefore, a person with MS at that stage could miss out on beneficial treatment. So this is an area where there is room for improvement and room for reform.

Women's Moderator Many of you are asking about how to become a member of the Group, Judy's group of online sisters.

Judith Lynn Nichols Speaker? If anyone is interested in forming a group like this, get to know others with MS on the message boards of online sites. There is another group similar to ours which started in the same way, and we correspond group to group now. So if anyone wants to start it on their own, it will grow from there.

Women's Moderator Members, please check out our two MS Member to Member Message Boards: Multiple Sclerosis: Medications & Research and Multiple Sclerosis Open Discussion.

tobytrack_WebMD I can only read a few pages of a book at a time, then my vision gets fuzzy. Could this be a sign of optic neuritis?

Judith Lynn Nichols Speaker? That's possibly a sign of optic neuritis. It could also just be a sign of vision changes occurring because the brain isn't sending correct signals. If there's any pain involved, it would be best to check with your doctor right away.

mariposatoo_WebMD Please accept our thanks for sharing. Is there enough money available for MS research toward a cure?

Judith Lynn Nichols Speaker? There are a lot of organizations trying to raise money for the cure. I think Montel Williams coming forth with his diagnosis, and his efforts to raise money will be a big help, but I don't think we can say there is ever enough money until we can find a cure.

Women's Moderator? Judy, thank you very much for joining us on WebMD Live. It has really been a pleasure. I hope you will consider coming back again to talk with the WebMD Members.

Judith Lynn Nichols Speaker I definitely will. I'd like to thank everybody for coming today, and I want to thank you for trusting me enough to help you with coping with MS. Please get peer support. We're all here to help each other. Thank you for letting me be here.

Women's Moderator Members, please check out our two MS Member to Member Message Boards: Multiple Sclerosis: Medications & Research and Multiple Sclerosis Open Discussion.

shiska_WebMD Thank you so much. Talking with you has been very educational and has offered a lot of insight into the problems associated with MS.

©1996-2005 WebMD Inc. All rights reserved.

Health Solutions From Our Sponsors