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Old 08-15-08, 02:50 AM   #1
c0urt
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You never want to hear a doctor say "uh-oh"

I had a neurology appointment today. After the usual poking and prodding (I have lost ten pounds because of the drugs) I got to talk to my doctor and hear a phrase you never want to hear in medicine, ” uh-oh.” We were talking about the fact I was having seizures daily lately, and after trying 4 medicines, several at the high safest dose. That I am showing no real improvements at all, and in some areas I am actually getting worse.

He noted, that having tried this many drugs for over a year now with basically no results. That it’s more likely than not I will continue to have seizures unless there is brain surgery. There are two problems with that. The first problem is the one I have with that. the fact no one actually knows whats wrongs with me, so I would rather them not melon balling my brain. It is the only one I have, plus I have put a lot of time into it. The second problem is the fact I don’t have insurance. Doctors don’t work for free typically, so even if they knew where to dig, I couldn’t pay them. So for now, they are trying a left field drug and anti-depressant.

After leaving the clinic I was heading to the coffee shop because I needed to see my friends. I kinda needed some reassurance at that point. Being alone probably wasn’t a good idea. Taking my usual route I woke up in the ditch with people standing over me which meant I’d had another seizure on my bike. One of these days I am going to break my laptop when I do that.
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Old 08-15-08, 03:07 AM   #2
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Geez, man. I'm sorry to hear that. I wish I had some advice or insight, but that's totally out of my scope of practice.

I sincerely hope they find something that works for you. Soon.
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Old 08-15-08, 05:55 AM   #3
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aw, court I'm sorry to hear that. Sounds like you're exceptionally strong and I have faith it will work out in the end.
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Old 08-15-08, 05:58 AM   #4
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yikes! good thoughts headed your way.
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Old 08-15-08, 06:00 AM   #5
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Yikes! I'm so sorry that things are going so wonky in your noggin right now. I hope that the antidepressant experiment works, and you can avoid teh surgery.
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Old 08-15-08, 06:35 AM   #6
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Where are you (what part of the country?). Most doctor offices and hospitals have a social worker who can help you negotiate the insurance maze and get some sort of coverage. You would probably benefit from seeing a seizure specialist, and being in a specialized center. There they can also figure out more about the origin of the seizures and possibly proceed with surgery if that is indeed indicated. If all else fails, look up the website for the National Institute of Neurological Disorders and Stroke (Bethesda, MD) - NINDS.NIH.gov. They have research protocols you may qualify for, in which case the work is done for free. And in the meantime, hurts me to say this, but I am sure you heard it from your docs too: you should not ride with this seizure frequency. You will really hurt yourself! I hope things work out for you.

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Old 08-15-08, 06:45 AM   #7
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From here, I can do little but offer positive thoughts and say a prayer for you. Keep us posted, and be careful. Perhaps time for a trike?
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Old 08-15-08, 07:36 AM   #8
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So sorry to hear this. I try to never take for granted each time I visit a doctor and am able to walk out without hearing bad news. I know it won't last forever (for any of us) but we need to be thankful for all we do have at the present time. Thank you for being brave enough to share this.

perhaps you can yet ride safely on a two-wheeler (even a trike needs an alert rider), but for now your laptop is the least of your worries.

I lost a dear friend who had epilepsy and just loved his motorcycle too much to stop riding it, in spite of doctor's orders. He was such a great guy but his insistence on driving and riding alone cost him every relationship he ever had, and eventually his life. I understand he needed to live his life to the fullest, but a lot of us miss him terribly.

I hope I am not sounding harsh or unsympathetic; I am sure I would not be handling it nearly as well as you are. not trying to be morbid here - you do sound very strong and I urge you to please be careful, consider all your alternatives and I wish you the best of luck.
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Old 08-15-08, 07:44 AM   #9
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wish I knew something that could help you. hang in there bro.
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Old 08-15-08, 07:47 AM   #10
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wish I knew something that could help you. hang in there bro.
same here.
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Old 08-15-08, 07:51 AM   #11
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I have a brain I'd be willing to give you, but it's kinda small and you'd probably just end up walking around like a cat...so...there's that...

Good luck. I hope the meds work. And keep riding, no matter what the rest of these knuckleheads say
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Old 08-15-08, 09:48 AM   #12
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Have they tried triggering a seizure while you're having a scan done? If you're having them daily and you seem to have an idea of what can trigger them that can many times help them see exactly where the problem is (which will help with either drug or surgery options).

Good luck!

((hugs))
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Old 08-15-08, 10:51 AM   #13
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And keep riding, no matter what the rest of these knuckleheads say
DOH! Ok, I'm a nervous nellie....just trying to make sure he stays in one piece while getting help. In all honesty I'd be out riding too.
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Old 08-15-08, 11:20 AM   #14
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::sigh:: Jeebus I wish they would hurry and find something!! Hang in there!
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Old 08-15-08, 02:33 PM   #15
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Prayers that they find the problem. How would someone go about finding a real life Dr. House?
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Old 08-15-08, 03:15 PM   #16
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Maybe you shouldn't be riding your bike if you have seizures daily and pass out. Just saying...

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Originally Posted by c0urt View Post
I had a neurology appointment today. After the usual poking and prodding (I have lost ten pounds because of the drugs) I got to talk to my doctor and hear a phrase you never want to hear in medicine, ” uh-oh.” We were talking about the fact I was having seizures daily lately, and after trying 4 medicines, several at the high safest dose. That I am showing no real improvements at all, and in some areas I am actually getting worse.

He noted, that having tried this many drugs for over a year now with basically no results. That it’s more likely than not I will continue to have seizures unless there is brain surgery. There are two problems with that. The first problem is the one I have with that. the fact no one actually knows whats wrongs with me, so I would rather them not melon balling my brain. It is the only one I have, plus I have put a lot of time into it. The second problem is the fact I don’t have insurance. Doctors don’t work for free typically, so even if they knew where to dig, I couldn’t pay them. So for now, they are trying a left field drug and anti-depressant.

After leaving the clinic I was heading to the coffee shop because I needed to see my friends. I kinda needed some reassurance at that point. Being alone probably wasn’t a good idea. Taking my usual route I woke up in the ditch with people standing over me which meant I’d had another seizure on my bike. One of these days I am going to break my laptop when I do that.
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Old 08-15-08, 03:29 PM   #17
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Court, there's nothing I can say that hasn't been said. Not knowing can be a mofo.

I'll gladly share some spirit w/ you.
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Old 08-15-08, 03:54 PM   #18
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The easiest thing to do if you need mucho cash for medical procedures is to find someone in Canada who will pretend to be your common law wife.
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Old 08-15-08, 04:03 PM   #19
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Much luck finding the problem.
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