does it seem like your Neuro does a lot of guess work too?

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seetseet

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Hi Everyone! I was just curious to know if their is anyone else out there who feels like their neurologist is just guessing or playing a "hit or miss" thing with the readon you have seizures and also the way to help control them?
I am not angry or anything, it's just weird I suppose...
Like what's the point in going if it's just all over the shop anyway?
Thanks ahead of time for your feedback! :)
 
seetseet

Its hard to say how much any neurologist knows about E, but it is limited as for the medication well that is hit and miss when it comes to controlling your seizures. The point in going is for our sanity and the fact that you might, no matter how small have a chance of full control of your seizures somehow. Its the thought that somebody might just know something and be able to help. Gives you something to look forward to and having some control over your seizures.
 
Yes absolutely--they have even said to me consistently in the past there is a lot of trial and error with respect to treatment, definitely not an exact science! But there are a lot of things behind your physiology, type of seizures, medical background and likelihood of success of a medication, and that's why sometimes a new doc or second opinion is helpful if you just aren't getting anywhere.
 
lindsayschu2 said:
and that's why sometimes a new doc or second opinion is helpful if you just aren't getting anywhere.
Click to expand...

:agree: 2nd opinions are always helpful and sometimes they are more knowledgeable than the first dr.
 
I would like to think that most neurologists - especially seizure specialists - are trying to test hypotheses rather than entirely taking a hit and miss approach.
Maybe I am just lucky but I have two specialists working together and they share their hypotheses with me, and what tests they are going to do and what medications they are going to try and why. Like any scientist performing an experiment to test a theory with my doctors there is some guess-work, but they are educated guesses based on current knowledge and the clinical experience that they and their fellow doctors have had.
 
I get the impression they are just throwing spaghetti up against a wall to see what sticks. That said I totally agree about second and even third opinions.
However, where I live i'm doing good to get a first opinion. I can either take a plane to Honolulu or a ferry to Maui or I can wait for the one neurologist who comes to this island once a month and is already booked up for May. And anything resembling an epileptologist is totally un-available.
 
SeetSeet, I really appreciate the way you phrase your sense of what is happening. I certainly do feel that way, too, and I have not responded well to it. That sense that they are throwing the spaghetti against the wall to see what sticks has not been good for my soul. I am impressed by the respect that Masterjen's doctors are showing her -- to actually reveal a hypothesis as a hypothesis! That is just great ... so respectful.
 
When I was first diagnosed it was a good bit of trial and error for a few years. It's not like the neuro can say "This med is going to work so we don't need to try anything else." They have no idea what caused my epilepsy so that made it a bit harder to see which meds and dosages would work.

Even now the meds that I'm on are doing pretty good but my neuro would like to try to reduce or get me off of some of them. I have no problem with this because I'd like to. So again I'm going to go through some trial and error.

If you don't like the way your neuro is working with you then get a second, third, fourth or how ever many opinions you want from other drs. Luckily I like my neuro and the way he works with me so I've stuck with him, his nurse practitioner was the one I had major problems with and told my neuro I was never going to see her again or I was going to another office if I had to. Haven't seen her since.

I have had other medical problems that I've gone to about 5 different drs for before I found one that figured out what was wrong.
 
I have had 3 or 4 different neuros in the past 10yrs or so and they did have a lot of guessing of "Here, try this one! That one didn't work? Then try this one and this one!"

Now I have an epileptologist and he also has that same feeling of "Let's try this! This should work since surgery didn't work! (Because I have no idea as to what to do with you!)"
 
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Thank you for all your replies, I don't know whether to say that it's good to hear that there are other people out there like me or not :/ ...
It's cool that "sharing of the hypothesis" happens, my neurologist doesn't do that :)
Most of the time I am cool with him, because he is nice and I suppose it is an automatic thing for me to "trust a Doctor" but it's pretty irritating to find that every single time he is wromg, hehe and pretty much wrong within two weeks.
It's all weird either way, because we're technically those test-mice sort of people (you knoe where you can sign up, especially when your in financial strife) except we're not get paid, but we're paying for it hehehe ...
And the first time it occurred to me when I was pregnant with my second boy and paranoid as that Keppra, as a new drug, probably isn't doing a whole lot of good for a tiny fetus and I started researching online, because all he neuros were like "Don't worry he'll be fine, but with that said ee are guaranteeing ZERO because it is a new drug"... lol and that's where I found that online was almost all brick wall, aside from the keppra research articles which stated "The fetus should be ok,.but we don't know for sure, as testing on pregnant women is illegal... but now that your pregnant and taking keppra, why don't yoi become part of our research?"

It's strange, does that sort of mean that we are "have to lab mice" because of our epilepsy ?
Most of the time it's ok, maybe even funny, ironic, hehe sometimes it's a little scary though :)

Thanks again for all your replies, it's nice to hear different reactions and stories, and how everyone lives through similar situations (lol I know I might sound like a weirdo, but it does mean a lot!)
Have a great day!
 
Ahem, and please excuse all my grammar and mispells above, I am writing from my phone via the webpage hehe early in the morning ;) sorry!!
 
SeetSeet -- You don't sound like a wierdo to me, and THAT IS for sure!!! Good luck to you!
 
seizuregirl said:
Now I have an epileptologist and he also has that same feeling of "Let's try this! This should work since surgery didn't work! (Because I have no idea as to what to do with you!)"
Click to expand...
Don't you just love it when they do that first person plural thing? LET'S see how this one works. And how are WE doing on that one? As if they were really there with you through the side effects and breakthough episodes.
:rolleyes:
 
AlohaBird, LOL, I think they do that because they believe that they can do no wrong, and since they had prescribed the med/s to you, and if it's helping with the seizure's, then they are with you every time you take them!

It'd be great if they really were able to see all of it in a non-dr point of view, I'm sure it would be eye-opening! There probably wouldn't be any talk of, "How are WE doing, feeling?" any more! But if they did see a seizure, or just a day in our life with epilepsy as a bystander, or a family member does, I'm sure they would be shocked or stunned with what we all go through!
 
seizuregirl said:
Now I have an epileptologist and he also has that same feeling of "Let's try this! This should work since surgery didn't work! (Because I have no idea as to what to do with you!)"
Click to expand...

The epileptologist I see now does the same thing. After a failed brain surgery, that's what she says to me. To me, the word that stands out is "should".
Well, yes, this drug should work, but then so should the brain surgery, don't ya think? They have no idea what to do with me now, except keep on guessing until something new comes to market. :ponder:
 
^^^Oh, yes. They are masters of The Qualified Statement too. I think they teach a whole class in that in medical school.

"This drug should, may, could, might, has been known to, can, potentially, tends to, has been shown to, seems to, perhaps will, if conditions are right, if parameters are met (whatever the F that means) have the desired effect on your seizures.
And don't you worry your pretty little epileptic head about the potential, possible, occasional, non-significant, rare, eventuality of all those nasty side effects.
So, let's see how we do on this one."
 
AlohaBird, You gave me a very good laugh just when I needed one! I am going to copy your sentence about those non-significant you-know-what's so that I can refer to it when things get too serious around here.
 
Luckily my nuro tells me "Lets try this med and see how it works. We might be able to lower a dosage or get you off of another med" because I'm on a good bit of meds at high dosages. So it's still a bit of a guessing game though.

He lets me know of the side effects too and that they may or may not happen.
 
I don't mind if the neuro says "Let's try..." as long as it's truly a collaborative relationship with mutual respect. But I haven't experienced that yet with any of the neurologists I've seen. At this point, I feel as if I know as much as they do about treatment options and outcomes -- and I definitely know more than they do about how my particular brain and body works. But it feels like it's always a struggle to get the neuro to actually listen to me. I'm basically in maintenance mode, so if I could write my own rX I wouldn't see the neuro at all...
 
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