[neurogirlfriend]

My name is Cara and I am here because my boyfriend Ben has a neurological condition that no doctor can figure out. He has epilepsy, and has had 3 grande mal seizures before, but he also has "seizure like activity" on a regular basis. This means he twitches with tremors ranging from moderate to severe, and his eyes can flutter or roll back but he is conscious.

Several years ago, after a battery of doctors, tests, and medications that almost killed him without ever helping him, Ben finally went to a naturopath and was told he should not eat wheat and should avoid white potatoes. Since he put these restrictions into place he has been able to resume a fairly functional lifestyle. His Seizure Like Activity (SLA) may happen for a week at a time, but he has weeks without any tremors at all. Before he changed his diet, Ben was not functional and had to live with his parents. He was in his late 20's then and is now 33.

Because all of this counts as a preexisting condition, he can't get health insurance to cover further attempts at diagnosis. I constantly tell him he needs to look into it more, for the sake of our future since we don't know if this is degenerative or what, but my argument breaks down when he asks what I have in mind that he hasn't already tried. I wish there was a real life "Dr. House" who specialized in Neurology and practiced for free.

[(Broken Wings)]

Welcome to you both

I've recently found a nautropath who has helped me too. She's very good, but leaving in a couple of weeks.

why don't you check about high risk insurance through the state. I have that. You pay dearly it don't pay much, but you can get through the door. as long as you stay in your PPO he should be okay with copays, no pays and not enough pay. I bought my high risk through the BC/BS agent.

It is a hit and miss sometimes with doctors. Why not find another nautropath.

Wishing you both happy days ahead.

Originally Posted by neurogirlfriend

My name is Cara and I am here because my boyfriend Ben has a neurological condition that no doctor can figure out. He has epilepsy, and has had 3 grande mal seizures before, but he also has "seizure like activity" on a regular basis. This means he twitches with tremors ranging from moderate to severe, and his eyes can flutter or roll back but he is conscious.

Several years ago, after a battery of doctors, tests, and medications that almost killed him without ever helping him, Ben finally went to a naturopath and was told he should not eat wheat and should avoid white potatoes. Since he put these restrictions into place he has been able to resume a fairly functional lifestyle. His Seizure Like Activity (SLA) may happen for a week at a time, but he has weeks without any tremors at all. Before he changed his diet, Ben was not functional and had to live with his parents. He was in his late 20's then and is now 33.

Because all of this counts as a preexisting condition, he can't get health insurance to cover further attempts at diagnosis. I constantly tell him he needs to look into it more, for the sake of our future since we don't know if this is degenerative or what, but my argument breaks down when he asks what I have in mind that he hasn't already tried. I wish there was a real life "Dr. House" who specialized in Neurology and practiced for free.

[azoyizes]

Hello NG, and welcome to NeuroTalk! Try not to let your BF give up, there has to be something out there.

I'm glad you found us, and feel free to check out the different forums.

Here is a link to the Epilepsy forum:

http://neurotalk.psychcentral.com/forum11.html

I wish both of you the best!

[bobber]

Hi cara
pre-existing conditions with most insurance companies is one year,,it worth the investment,,i use cinergy health , it covers alot of pre-existing,, and at most has a 6 months wait,,the pre-existing clause only kicks in if he has seen a dr in the last 6 months,,so even if he has a pre-existing condition,and he hasnt seen anyone in the last 6 months,,they will pay for it immediately,,,or if he has seen a dr ;;lets say 3 months ago,,,they will only make him wait 3 more months,,,,call them,, pm me if you need anymore info,,,,,,,,,,,bobber

[pabb]

Originally Posted by neurogirlfriend

My name is Cara and I am here because my boyfriend Ben has a neurological condition that no doctor can figure out. He has epilepsy, and has had 3 grande mal seizures before, but he also has "seizure like activity" on a regular basis. This means he twitches with tremors ranging from moderate to severe, and his eyes can flutter or roll back but he is conscious.

Several years ago, after a battery of doctors, tests, and medications that almost killed him without ever helping him, Ben finally went to a naturopath and was told he should not eat wheat and should avoid white potatoes. Since he put these restrictions into place he has been able to resume a fairly functional lifestyle. His Seizure Like Activity (SLA) may happen for a week at a time, but he has weeks without any tremors at all. Before he changed his diet, Ben was not functional and had to live with his parents. He was in his late 20's then and is now 33.

Because all of this counts as a preexisting condition, he can't get health insurance to cover further attempts at diagnosis. I constantly tell him he needs to look into it more, for the sake of our future since we don't know if this is degenerative or what, but my argument breaks down when he asks what I have in mind that he hasn't already tried. I wish there was a real life "Dr. House" who specialized in Neurology and practiced for free.

oops, had responded to your other post!

[Darlene]

Welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene

[Hockey]

Your boyfriend is lucky to have such a devoted partner. You may not know how many relationships collapse under the pressures and mysteries of neurological illness. However, I hope you do know what an absolutely special person you are.
Good Luck

[neurogirlfriend]

Originally Posted by Hockey

Your boyfriend is lucky to have such a devoted partner. You may not know how many relationships collapse under the pressures and mysteries of neurological illness. However, I hope you do know what an absolutely special person you are.
Good Luck

Thank you so much for your kind words, Hockey. If my love for this man was an average love, or if he was less than the most generous and loving soul I have ever known, supporting Ben during the rough times would feel like work. But he gives me so much more than I ever imagined someone could. I know this may sound hard to believe, or even corny, but being with Ben - "standing by him" - is neither a burden nor even a choice. I will walk to the ends of the earth with this man because my life would be unrecognizable without him. Thanks again!k

[Dmom3005]

Epilepsy is something that you have pre-existing most of the time if you
start as a child and don't out grow it.

Because you need medications, and to get these it takes a doctor.

But he needs to apply for medicaid through his state. Realizing
that the worse picture you present is best.
Also if he does'nt have a job, or makes under the amount he should apply for SSI or ssdi.

Donna

[neurogirlfriend]

Originally Posted by Dmom3005

Epilepsy is something that you have pre-existing most of the time if you
start as a child and don't out grow it.

Because you need medications, and to get these it takes a doctor.

But he needs to apply for medicaid through his state. Realizing
that the worse picture you present is best.
Also if he does'nt have a job, or makes under the amount he should apply for SSI or ssdi.

Donna

Hi Donna,

I'm not exactly sure I understood some of what you wrote, but in terms of getting medicaid or other forms of government aid, Ben does not qualify. He owns a small business which precludes him from eligibility, yet doesn't make him enough money to be able to pay for healthcare on his own.

Ben has a good primary doctor whom he likes, but who does not have a background it epilepsy, celiacs, or neurological disorders. He prescribes Ben the medication Ben needs to keep his epilepsy under control (i.e. no grande mal seizures) but does not help the "seizure like activity" not directly associated with the epilepsy. I know it sounds rather confusing and counterintuitive, but the tremors and twitches Ben suffers from on a weekly basis are not part of his epilepsy, although both pathologies stem from his generally messed up nervous system.