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Joined: Jan 26, 2006 Posts: 1 Location: South Point, Ohio
Posted: Thu Jan 26, 2006 7:09 pm Post subject: My sister has been diagnosed w/MS
First let me say that I am new to forums and am just looking for some help.
My sister was diagnosed last week with MS. She has optic neuritis and has had all the blood tests, MRI and three IV's of methylprednisolone. We all go to the doctor tomorrow to discuss blood work results and the MS diagnosis. My family and I are very new to this and although we have been researching MS online, we are not sure what questions to ask the doctor.
Is the doctor a neurologist? If not, do you expect to the doctor to refer your sister to a neurologist? Initially I saw a G.P., then three neurologists, and a G.P. who focused on alternative medicine. In each case, I was usually overwhelmed with information - more answers than I had questions for. Your sister will need time to sort through the info.
In each case, the neurologist recommends a treatment, usually one of the currently approved M.S. drugs. They'll usually provide you with all sorts of imformation on these drugs, everything from videos (vhs), 800 support numbers, to a nurse specifically trained in the treatments.
From there, I guess it is a matter of deciding which treatment plan your sister and her doctor feel is the best for her. If your sister decides that she would prefer a different treatment, then she might ask the doctor what other options are available.
Have you been to the site Remedy Find? At that site patients rate their experience/effectiveness of various treatments. Otherwise, I think you'll find this site one of your greatest resources for information. However, with regard to questions, I think questions will depend upon the treatment plan your sister chooses and how flexible or open the doctor is.
If you review the material posted on this site, you might find that your sister will be interested in options other than the currently approved M.S. treatments. If so, she may want to ask the doctor how he feels about these various treatments.
Unfortunately, there are no routine/suggested questions because there are so many variants. Often you'll find that the doctors cannot even answer the questions because there's so much they simply don't know. In fact, some of the alternative therapies have information available for the patient to share with their doctor.
Best wishes to your sister and your family as you endure this maze of information, make decisions, and supprt her.
Tell your sister to keep a journal with every twinge documented. If she has plans to change her diet she should also document that as well as any supplements she takes or starts. This will help in the future.Other things that need to be documented are gas, stomach rumbling,flushed face, grey color to skin, sunken eyes, restless leg(jerky motions while relaxed), heartburn, pins and needles, burning feelings and other's that will let you know if your body is having a hard time coping. Get her to ask to be referred to and allergist and have then run those test so she can eliminate all intolerances from her diet. Also the E.L.I.S.A. allergy blood test should be ran. She also needs to be checked separately for Celiac disease which is a test for Gluten intolerance. Stand firm with the Doctor don't let him tell you it is unnecessary or that it is not relevant. If he knew what was relevant he would have a cure in hand. Read Read Read everything here. If the Doctor you have is not flexible replace him quick. This was what we did right off the hopper and so far so good. Check on vitamin D3 and mention Paul O'Connor(St Mike's Toronto) is heading a study on it and prescribes between 2000iu-4000iu per day to all his MS'ers. Cholesterol should also be checked and if it is high she should as to be put on a Statin drug.(opinion only) John is on Lipitor his isn't high but we figured we would give it a go anyway.Come back here with your questions that arise someone always seems to have the answer's. Good luck today. _________________ John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX:r. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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r. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.