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Posted by Barb on July 04, 2000 at 13:26:57:

In Reply to: Re: Mesantoin posted by Nancy on June 28, 2000 at 22:38:52:

: Hi my name is Nancy I am 44 and have been seizure free since the age of 13 as long as I had my mesantoin. I can not beleive a panel of men and or women can decide to take a medication off the market that is so crucle to peoples lives this is the only drug that allows me to lead a normal life. I feel like a guinie pig, this one doesn't work or gives you hives so try this one. Just give me back my mesantion. I was able to have three children, hold down various jobs, drive a car. I had a very independent life untill this past April, what a birthday present since mine is in april and that is when I had to change medications. I just want my life back I don't want to have to worry am I going to have a seizure today. this is not at all how anyone should have to live each day of their lives. Where is there a board we can notify more people about the reimbursement support line? Thanks for reading this and getting back to me.
: Nancy : At age 22 I started having grand mal seizures. I have been on many medications over the years, but 13 years ago my Dr. came up with the combination of tegretol and mesantoin. Oh boy, seizure free!! My problem is they have now stopped manufacturing the mesantoin and I have to transition to a new medication. Imagine the fear of going back to what I was. Never able to drive anywhere, depending on others to get me places, not even being able to bathe without someone in the house. This was very tramatic for my children also. I am now 55 and have three beautiful grandchildren, I work and I drive. I feel helpless not knowing what the future holds for me. My husband is very supportive and we have been all over trying to find this medication. I would like to take one of the people from Novartis Pharm. and have them live the life I did for one year and I know they would put it back on the market. I also told them so when during one of our many calls to them. I lost eight pounds in 4 days out of worry. I didn't need to lose any weight. Thank you for listening because no one else really understands what it is like to have a seizure and most have never seen one.
Nancy, How are things going for you now that you have been off mesantoin for a few months? What medications did they put you on? I start the end of this month and am very scared about my future. I have written to everyone including the President of the United States. I am getting no where. No one knows the fear of working and having a seizure while there. I have lost a job opportunity when they found out I had epilepsy. I would love to form some sort of committee and go to the White House to let them see these companies are in it only for the money and not our concerns. Good luck to you and please respond. Barb

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