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Old 02-04-2003, 02:20 PM   #1
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I have epilepsy and haven't seen a doctor or taken meds in over 3 years. I haven't seen a neurologist in over 5. I am just living with my seizures when they come. Too many roadblocks to even bother with trying to treat it.

 
Old 02-04-2003, 07:36 PM   #2
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What type of seizures do you have and how frequently? What have your past experiences with treatment been? lazoo

 
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Old 02-05-2003, 04:38 AM   #3
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My petit mals average about 1 a week with the occasional 2 or 3 bunched together in a 24-48 hr period, while my heavier seizures(loss of muscle control, no loss of conciousness) occur on the average of about 1-3 a month and also come in bunches from time to time in a 24-48 hr period. I was on meds and seeing a Neurologist from the age of 10-20 and never really controlled them, I was pretty drugged up through High School(the school called my mother asking if I had a drug or drinking problem), I was a walking zombie on Tegretol(500+mg) and Depakote(2500mg) a day.
I can't remember what age it was when I had to stop seeing a Neurologist due to no longer being insured on my fathers insurance. I tried getting a Neurologist at the age of 25 and it lasted a couple visits due to lack of payment. About a year after that I was going to a pri-care physician on a sliding scale at a town 30 miles from where I am(around the corner from my ex's parents house). Those bill's even started adding up so that was the end of that. Through the pri-care phys. I was taking Dilantin(500mg morning, 600mg night)
which was ordered for a 3 month supply at a time from the drug maker. Once my visits with him ended I gradually lowered my own dose with the remaining pills from my final 3 month supply until I no longer took them. I have been treatment free since then(over 3 years).

 
Old 02-05-2003, 04:44 AM   #4
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I must add, the dose of Teg and Dep in high school I posted was only the morning, I can't remember what I took at night but it was pretty close to the same thing.

 
Old 02-05-2003, 05:38 AM   #5
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I'm sorry I don't know much about petit mal seizures, wish I could help you more. Sounds like it would be very difficult for you to hold down a job. Don't know much about public assistance (welfare?), but I thought this country provided free medical care to those who cannot afford it? Maybe someone else will have these answers for you. I feel for you and wish you well. Take care.

 
Old 02-06-2003, 07:55 PM   #6
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I am sorry to hear of your trouble. I don't know your whole financial situation and I don't know alot about about medicaid. But for those of you that don't know this, for people who are disabled due to seizures and must go on SSI there is a long waiting time before you get any medical coverage. Then after you are on medical coverage and hopefully on medications that are effective, SSI kicks you out of the program because you are not having "enough seizures" anymore. So you are back to square one, you can't find a job, no insurance company will take you and you can't afford the medications, the seizures return, get the picture. This information came from my lawyer and sites from the net. We all need to take a stand and write/call our elected officials and help to change this system. If you go to www. governmentguide.com/main.adp you can type in your zip code and it will tell you all your elected reps and you can e-mail them from that site. My elected rep. in helping me with my SSI case. It's worth a try.

 
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