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Discussion Starter #1 (Edited)
Ok all. Here is the story. I have seizures that so far 3 trips to the hospital (while having them) I have not figured out. I don't drive at this point. It sucks. The seizures drive everyone around me (as well as me crazy) I act like an idiot without knowing it. The last major one I had Troy (redrunnerTC) was out of town and I *think* fell down the stairs and cracked my ribs. Went to the ER (again - the 3rd time) and no additional info. They aren't epileptic. But I keep cracking those ribs!

I was tested for MS and parkinson's. Doesn't seem to be that either.

With that said I have 2 very close friends (Cottora members) who have offered to fly me to the Mayo clinic in Minnesota and help me get put up. The last part I need to do is raise some money to help with the co-pays. (I am not asking TTORA members for this - that is what family is for) Cuz if you have insurance you know... well the co pay can kill you. My last hospital stay (when I fell) in May already has a co pay at 1,200$ for E.R., MRI, Cat scan and blood work... all of which showed NOTHING! (For the 3rd time!!!)

I almost wanted to dig a hole and call it good. But then I realized these hospitals in Colorado are not research hospitals and they don't know how to diagnose something they have NO clue about.

I am tired of hiding behind my medical problem. Yes I will take this thread down before I try and work again. And for the record I can't work. This last Seizure came without any aura and so fast I never saw it coming. I can't drive to a job... and I live in the middle of no-where Colorado...

So I am asking for help. Right now just support. I am going to offer what I can to my family members as far as computer support to make Face Book pages for those who need it as well as picture websites. I don't believe in asking for money without doing something. So right now I want to ask for help from you guys in ideas.

And if my friend (Who is a CoTTORA member)is willing to post up about his help then great!)

So let the ideas come. How can I help those neophyte family members of mine for $$ donations for co-pays at the Mayo clinic?

Anyone else have a family member with a seizure disorder that has not been diagnosed?

Ideas? Thanks all. Molly.
 

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Discussion Starter #2
BTW - those of you who have seen me have one please describe it here. I need that info ok?
 

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Ok 7 of you have looked at this and are to scared to comment! Come on guys. This is molly here. I am not asking for money... Just ideas. Please help!
 

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I'm sure i can speak for everyone when i say we support you Molly. When you get a more clear picture of what your plans are please let us know so we can help in anyway we can.

Seizures are a very bizzare thing and many times a symptom of an underlying problem which i'm sure you're aware of. Seeing a specialist sounds like a fantastic course of action and i hope all works out for you.
 

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Discussion Starter #5
Thanks Ben! That is the kind of support I need! :D
 

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I'm sorry I don't have any ideas to offer up, but here's a bump for you and definately x2 on hoping this course of actions yields better results. :) If I think of anything I'll be sure to let you know.
 

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a description of what you are like when having one of these seizures is difficult to explain.

You shake while attempting to move your arms/hands that suggests lack of motor control.

While you seem to understand what is being said, you seem unable to form a coherent sentence and act confused or distracted easily. at best and at worst stare as if not understanding the language however attempt to move and do as directed. I have noticed varying levels of your seizures and mental reaction varies accordingly.

I've noticed a very wide eyed look as well, that is difficult to describe, but the closest I can come is that you looked very shocked or are trying overly hard to keep your eyes open. Seeing this look on your face I can usually tell that you're about to go into the worst part of your seizures which involves you being completely unresponsive often times passing out.

Also, while passed out, you also tend to shake randomly as if experiencing a bad dream or some such (I can only compare to an animal that moves about when they are asleep).

The shortest way to explain it is that you appear as if you are almost instantly shitfaced drunk, but with some other attributes that indicate something else is wrong (the shaking, etc). The first couple of times I witnessed this, I thought you were perhaps taking something, however since then, I've spent uninterrupted time while you go thru the phases and know better.

You know you have my support and help in any way that I can.
 

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To add, my experience is that once you pass out, you are generally safe (meaning that you don't seem to attempt to get up and move around) Though I've only had one instance where I was present for a period of time after you passed out (when Troy was in Hungry). Also when waking up you seem sluggish and hungover tho with the same sluggish mental response and easily confused.

Sometimes there seem to be more mild aftershocks for a few days and you seem unusually depressed.

Also, I've noticed that the week before a big one, you complain more and more that you're not able to sleep.
 

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BTW, I was a couple of those views you noted above. I read it a few times before deciding if and how much information i'd post.

Personally I'm a private person and would be angry to see this kind of information posted about myself. I know you asked for it, but it still seems... impolite I guess, to oblige.

Feel free to delete and/or mod-edit my posts.
 

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Molly, I'm here for ya, as well as the rest of this group.

Same was what doug stated, if you feel what i post crosses the line then please delete it and know that I have no intentions of doing so intentionally.

I think I recall you saying something about some of your family has had issues with Parkinson's? Now I may be wrong, which if I am correct me. However, could the doctors of found no solution to this problem because they're looking for the wrong problem? If they're looking for seizures, but it's something else then that could explain why there has been no answer, or solution. Have they ran tests for Parkinson's to see if that is possibly it? I don't know much about medical related issues, but I would think it would have to be something different. Especially if they still haven't found anything solid to say its one thing or the other.

You've got my cell # if you ever need anything, I'll do what I can to be there!
 

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my dad lives in owatonna which is about an hour from the mayo clinic, he is a very good guy he may be able to offer some assistance while you are out there, ride from the airport to the clinic something along those lines.........my step mother fared the last days of her life fighting stills disease at the mayo clinic..........im sure he would be willing to help
 

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To add, my experience is that once you pass out, you are generally safe (meaning that you don't seem to attempt to get up and move around) Though I've only had one instance where I was present for a period of time after you passed out (when Troy was in Hungry). Also when waking up you seem sluggish and hungover tho with the same sluggish mental response and easily confused.

Sometimes there seem to be more mild aftershocks for a few days and you seem unusually depressed.

Also, I've noticed that the week before a big one, you complain more and more that you're not able to sleep.
That is called a Postictal state. People coming out of a seizure will often act drunk or almost completely out of it for typically around 15 minutes post seizure.

Seizures in and of themselves typically aren't an issue, and they aren't life threatening at all by themselves (unless you seize and fall and hit your head or something along those lines obviously). It is the underlying cause that is where the concern lies. They are considered serious because of this. The problem is finding out what is causing them. Generally speaking, there are tools to figure out where they are coming from. As Molly said, these tools have thus far not pin pointed the reason. That is why seeing a specialist i think is a good course of action.

Now granted i wasn't in the room when her doctors gave her their explanation, but based on the info given i think you need to dig deeper Molly.

Even things as simple as cutting down on stress and exercising can help with this type of stuff. The brain is an extremely powerful thing, and it can create problems or symptoms on its own. I'm not suggesting this is the case, but you would be surprised. And if you stay up at night searching web md and posting on medical forums that can also add to the stress you're experiencing and make symptoms worse. The internet is an extremely valuable tool in learning about disease process and symptom checking, but the one thing they aren't held accountable to is the psychological effects it has on people. I have a good friend who is in his residency (finished with med school, but still in the "learning" phase but practicing) and he says people will come in and before he even has the chance to say a word to them they have already given him 10 different things they may or may not be suffering from.

Again i'm not suggesting this is the case, since obviously you've been to the doctors several times, but it is something to think about in the mean time.
 

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Molly, I am not sure I have seen you having an episode or not. However, I sometimes wonder about some of your posts here, i.e. the coherancy, misspellings, etc., when I know that you are normally a pretty literate person even on the forums. Which, I guess, leads me to wonder if those are a result of a lesser episode perhaps.

I know you have been to the hospital but also wonder if they have been looking in the wrong places. Let me relate a story. My daughter has MS. It was discovered that she has MS purely by blind luck. When she was having her first (that we know of) episode, it left her virtually paralyzed from the waist down. When we took her to the ER, they were approaching it from the standpoint of some sort of lower back injury, so that is where they took MRI images, lower back. The luck of the matter is that the image was just high enough that a sharp eyed doctor saw something on her spinal cord and ordered MRIs to continue all the way up and the end result was a diagnosis.

Now back to you. You said they tested for MS. How? AFAIK there is no "test" per se for MS, they need to see if they can spot lesions using an MRI with contrast and we have found that there are very few neurologists in the state that are skilled with the diagnosis and treatment.

Epilepsy is another disorder that is not easily diagnosed. http://www.medicinenet.com/seizure/article.htm From my reading, some of your symptoms *could* fit.

Obviously the list could go on and on. DISCLAIMER: I am not a doctor. I am, however, one of the few people in my family that do not work in the medical field. If you run across questions, I am sure I can track down answers (not real diagnosis type questions, obviously). And if you just want to talk, you have my number(s), I think.

Now to ideas. Besides you doing the things you mentioned, how about fun fund raisers, like a Poker Run, or a 'treasure' hunt on some trails? We've used HOWs to raise money for WFTW, why not one for you? Do we have a member who is an ebay seller with good rep that could sell donated items with the proceeds to go to a fund?
 

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molly, like others have mentioned you have my cell # if you need anything too. I have also witnessed your "aftershocks" as doug put it. he gave a pretty good description. I know most of us here are your friends and can help with whatever you need, rides to the airport, help during a seizure if you can feel it coming on call one of us and we can band together to help you out.
 

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i myself have had 2 seizures inmy lifetime. i can remember that while i was having it i "dreamt" that i was falling away into a fuzzy world, like a snowy tv set. i could also here people calling my name the whole time. when i came to(i passed completley out) the voices i heard in the dream were that of those around me trying to wake me. all the doctors could tell me is that it was caused by extreme mental and emotional stresses............i dont know you at all, but i hope you can pull through this tough time......
 

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I haven't really hung out with you that much, but the one time you sorta had one was at a South HOW. All I really remember was that you were super tired and laid down in someone's truck bed and took a nap. Maybe the seizure was so physically/mentally exhausting that it just drained you for a bit?

You know we've all got your back here. :)
 

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Molly,
I know that we havent been on the best of terms for awhile, but this is coming from the heart. I truely hope that things work out, they always seem too, I dont like seeing (or hearing) about people with health issues, I hope the MDs can figure out whats going on and get it fixed, and quick, you still have a lot of years left, and lots of friends, do not let it get the best of you, dont give up.
On the work issue, IMHO, using the excusse "I cant drive" is a just scapegoat, there are lots of work from home jobs, yes, some are scams, do your research, there are some real ones out there.
I honestly wish you the very best, keep fighting, dont give up, Im not a real religous person (dont know if you are) but Ill say a pray for you, keep your chin up :cool:
 

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Discussion Starter #19
Thank you to everyone for the input. All the from the head and heart input as to how I am when seizing is VERY important. I need to know what I am like because my point of view is so very different than from what you all see. Doug, I hide nothing and I need the info so keep posting. Like I said I will take this all down later for my personal safety. But right now I need the forum to help!

And Ric, thank you for the heartfelt words. I need them because this is getting old and fast Though trust me I have almost gotten jobs many times from home. Maybe it is the fact that I am honest that there are times where I Have to check out for 2-4 days when I get seizures. That scares a lot of people away. And that is the honest truth, Though for the record I have not had a major seizure since May 17th-ish when troy was out of town. I have had mild ones but nothing like the bad one I had then, which is so very rare... since I seem to cycle on a 4-6 week cycle. I am now going on 8 weeks without anything major. And I have had a lot of stress since then (WFTW planning) so stress is not necessarily a trigger. I have also lost about 23 lbs since then from walking Layla so much - so I am getting exercise.

Still noting conclusive....!
 
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