MS: Women Living with Multiple Sclerosis (cont.)
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.