Seizures

rafael

I have had seizures for over a year now and my doctor said that he can't find any reason for them to happen, they happen twice a week sometimes more, I have applied for disability but was told my seizures weren't a legitimate disability. What should I do, lawyers apparently can't help me, and doctors keep giving me the run around and just keep running expensive tests, I'm at the end of my rope, if anyone has any advice it would be most appreciated.

Siska

Support groups might be able to help you. Do you live in the US? If so ---> http://www.epilepsyfoundation.org/aboutus/Find-an-Affiliate.cfm?CFID=3639597&CFTOKEN=40518308

Hevach

Have you seen a neurological specialist? If your doctor hasn't referred you to one already he's a bad doctor, but my wife works for one as a nurse/office manager and has had patients come in who've been given the same answer you have for decades and finally found one themselves, many of whom were diagnosed after a few outpatient tests. Edit: She tells me that in some cases, the doctor seeing the seizure or having it happen while hooked up to monitors is necessary.

supabeast

Get a second opinion from a neurologist. Even if another doctor just tells you the same thing at least it’s a lot less likely something is being missed. But they may find nothing. Even when doctors think they have a cause they can really only be sure when anomalous activity stops and the seizure goes with it.

MentalExercise

Who did you talk to about disability?

WildEEP

List the doctors and specialists you've seen in the last 12 months.
List the work and government personnel you've contacted about disability within the last 12 months.

We'll start there.

zagdrob

I was in a similar boat when I had my first seizures. The doctors couldn't determine a cause, and put me on dilantin which treated it.

Have you been placed on any treatment?

If you are, and still have multiple seizures each week, have they tried other medication? Sometimes it takes a few medications to find one that is effective.

What is your job? Does it require driving or working around machinery or at heights? If its just a desk job, no - you probably won't get disability.

See a specialist and get a 2nd opinion. If you are put on medication stick to it. Seven years w/o a seizure, and new we are talking about getting off it.

rafael

I have Gone through blood work, ct scans, ekgs, I have had so much done, and now my medical bills are as high as $35000. I don't know what to do anymore, the drs won't help apparently I don't qualify for ssdi, and as for my dr sending me to a neurologist he never did, and I looked it up a visit would be $10000, I can't afford any of this.

Siska

After looking things up, it seems that you need a certain amount of documented seizures to qualify for social security disability, which is something your doctor would help you with. It is also apparently harder to qualify if you first apply when you are an adult, rather than as a child (makes no sense, I know). But it is possible to qualify even as an adult, there is just a lot more bureaucratic resistance.

I think you should check this site out. ---> http://www.epilepsyfoundation.org/aboutus/Find-an-Affiliate.cfm?CFID=3639597&CFTOKEN=40518308
They might be able to help you with finding the right doctor, legal help and other general advice with how to cope.

ceres

I don't know where you got that information, but I guarantee you it is not $10000 to talk to a guy. The visit may not be cheap, but you're not looking at thousands just to go see him. Seeing a neurologist is absolutely necessary, and he may be able to give you some ideas or point you in the direction of an organization that can help you get lower-cost treatment. The person may even work on a sliding scale himself, but you need to really make some phone calls and find out, because there are countless things it is completely unsafe for others for you to do if you have untreated epilepsy. You are certainly not safe to drive.

zagdrob

Ouch about the money. Ok, I'm not a doctor but I have been through part of what you're going through.

First and foremost, I assume you've already done a glucose tolerance test (drink large cup of milkshake, test your blood sugar levels) to make sure you aren't just hypoglycemic. Epilepsy and hypoglycemia are commonly misdiagnosed for each other.

Second, I assume that your doctor has placed you on at least one type of medicine. Dilantin is the most common, but barbiturates are also relatively common. Have you followed their instructions and did you respond at all to the treatment? If not, have they tried another treatment? This is usually one of the first steps - sometimes even before they really get into testing. I did all the tests, no cause was determined...but as long as I take my 500 mg / day of Dilantin, no seizures. Otherwise...absence seizures throughout the day, grand mal about once a month...going on a decade without seizures for $5 / month in pills.

Third, you should be able to do a consult with a neurologist for a lot less than $10,000. They will go through the tests you've already had (EEG, Cat / MRI / PET / whatever, etc) and will ask some questions about your history and family history. It's possible you are hypoglycemic, it's possible you are epileptic, it's possible something else is going on. They may recommend further testing that will be very expensive, but if you let them know that you need help and can't afford further testing they may offer some other, and more inexpensive, options.

Fourth, get on a board that's specifically about epilepsy. Someone there has been in your exact situation, and may be able to direct you to certain doctors, assistance funds, legal help, etc far better than we will here. We want to help, but sometimes directing you to the right person / group is the most helpful thing someone can do.

Finally, as your medical bills start piling up, get in touch with your medical system. Let them know you can't afford to pay and find out what they can do to adjust them. They may have programs for people with low / no income, and if you are paying the majority of costs out of pocket they may be able to bring them down to a more reasonable level. It can't hurt to call, they would rather get some money than no money, and it can be easier to get them to adjust it now vs. when you are already 120 days behind and going to collections.

Please let me know, especially about the treatment / medication(s) you've been placed on. I was told that more often than not, the doctors never determine the actual cause - the testing is more to rule out other problems like hypoglycemia, a brain tumor, etc than determine what your 'trigger' is.


Also, I don't know where you are located, but you shouldn't be driving. Here in Michigan you MUST go six months seizure free before you get behind the wheel. You WILL get charged with a crime (reckless endangerment, manslaughter, etc) if you are driving in that six month period and get into an accident. I'm sure your doctor told you this, but I just wanted to emphasize how dangerous it is...I was driving when I had my first seizure and if it had come a few seconds earlier or later I would absolutely have killed myself or someone else.

bowen

The visit is not going to be $10,000.

Probably more like $300/hr.

Most places will work out a payment plan. Alternatively, you should see if you qualify for medicaid.