Insufficient Testing, Hasty Diagnoses

[Matthew74]

I was wondering what you guys thought...

I often see here, and elsewhere, that doctors aren't doing their job with regard to people having their first seizure or seizures. People don't get EEGs, aren't referred to neurologists, and don't get MRIs. Some aren't diagnosed after multiple seizures, while others apparently are after one. Then there's the whole thing with one EEG result being treated as conclusive, whether positive or negative. Another issue is nonepileptic seizures, their diagnosis, and especially what seems to be a lack of referral for their treatment. Of course the failure of doctors to educate patients is another issue.

I realize that health care varies dramatically from place to place, but if what we are hearing is at all representative, people with epilepsy, or who might have epilepsy, get really lousy care way too often. I can say that with certain doctors I have seen I was treated inadequately, even by people who should have known better.

 

[knothing]

I had a neuro that was a funny guy when it came to Epilepsy. It was his own set of rules and they kind of worked but didn't.
1st grand mal - everyone can have one and we'll get a bunch of tests run and if tests come back normal good. If you have another go to the hospital immediately.
2nd grand mal - Run drug test to make sure you are not lying about drug usage and get an eeg. All normal sorry you have epilepsy and here are the latest and greatest pills....
3rd and 4th (9days apart) - neveer had a breakthrough on this so take this one with it and I am sending you to the best guy in the area, don't worry he'll take you

I now have a great specialist and the only shame is I take 2 extremely expensive meds since the neuro thought that the latest and greatest fixed all. But to his credit they do work.

Based on my experience health care varies dramatically from doctor to doctor.

 

[AlohaBird]

Doncha just love it when they accuse you of taking drugs (the evil kind) and/or NOT taking drugs (the perfect kind they prescribe) because, one way or another, it has to be your fault. Couldn't possibly be that that the GD drugs just don't work.:soap:

I've traded in my Depakote for some cannabis paste and am feeling much better.


Yes, neurological care does vary greatly. I have finally found a good one but went through a lot of horrible ones over the years.

 

[Howll]

I had three in my teens without any diagnosis, and thinking back I always thought I had an EEG back then but I'm thinking now that they only ever gave me a CT Scan -_-
The epileptologist I saw was nice and all, the whole thing just seemed rushed. There was no sorta "aftercare" advice, it was very much take these drugs, if you get a rash go to the ER, and you're done. If it wasn't for forums like this, I wouldn't have even know about the self care that can be done to aide in the reduction of seizures. Diet and lifestyle changes for example, the guy I saw didn't even tell me to stop drinking or at least cut down, which I thought was odd. Never mentioned any supplements that may help, anything to avoid. It's frustrating, because there are so many things that could potentially be a hazard, that I really think everyone should know about so they can make the choice on whether or not they want to risk it.

 

[Matthew74]

I really think that an EEG, MRI, and neuro consult should be standard for anyone who has an unprovoked seizure. Certainly if they have had two!

As far as I can remember, no one ever told me about lifestyle issues like avoiding caffeine and alcohol, sleep, stress, diet, what sort of supplements you should take, what you should not take, etc. Usually when I asked I was told it didn't matter. The only exception might be drugs and alcohol, but I always put "no" on the form where they ask you, so maybe they didn't say anything.

 

[Carpentergirl]

I don't talk to my doctor but once a year because he rushes me in in about 15 minutes for that one visit....he makes me to the point where I don't even call him when I have a seizure in between yearly visits...I just give him an annual report...lol...im so much on my own it seems like...such the same routine for 13 years now...you have inspired me AlohaBird...it's time for a change....I had been excercising and feeling great until seizure last weekend, but I might have to try that hemp paste...it's just trying to explain it to my 13 year old...she has made it so crystal clear how adamant she is against weed...I promised her I would never smoke grass.and I don't know how I can explain to her how beneficial this can be for me...and I could probably talk till I'm blue in the face about the legality of it all...but...she is a selfish pre-teen....and nothing sinks in right now! ha ha....sorry...didn't mean to hijack your thread and get off topic...

 

[AlohaBird]

Technically there is a difference between Hemp and MJ. Anything with a low enough %age of THC is classified as hemp. Hemp is used to make ropes and doormats and such. George Washington had acres and acres of the stuff growing.

The difference is in the intent to me. The intent of getting stoned is just not involved here. While many medicines can be mis used and over used, what makes it "medicine" as opposed to "doing" drugs is that it is for a real medical purpose.

You can have the "drug" grown in the ground courtesy of Mother Nature or the "drugs" created in the lab by pharmacologists. Personally I trust Mother Nature more.

People take prescription meds all the time that make them sleepy, dizzy, etc. So just who is or isn't "doing" drugs?

 

[Matthew74]

I've given that some thought. Of course I don't have a drug addiction, but I am on drugs. People don't think of it as being the same for obvious reasons, but in some ways it is the same. You still live with the effects. Just because there is a reason for taking them, and all things considered you are better off, does not mean that your quality of life does not suffer. I'm on drugs, but I have to try to live a normal life, and am expected to act "normal", as if I wasn't walking around drugged all the time.

My OP though was about the irresponsibility of doctors giving inadequate care to people who need it, not so much about the inadequacies of available treatments. (Or that hemp should be available, which it should.) Some people who probably should be given meds aren't given that option. They are sent home, or they are given meds, but no real attempt is made to assess whether the meds are working, or if they would do better with something else.

I have to think that if the basics of what is available now were provided consistently, and adequate follow up was given, the culture of treatment would change from "there's not much we can do", to "we are going to do everything we can for everyone". If that were the outlook more treatments would be available, because they would be doing a better job of looking for them.

I have had other health issues, so I know it's not only people with epilepsy who get ignored, but I do wonder if there is a carryover from when it was classified as a mental illness, not much could be done, and people assumed that people with epilepsy could not live normal productive lives. Now that I have had good care, I'm honestly shocked that a GP would presume to take care of someone with epilepsy, or that there are neurologists out there who seem to think one office visit and a prescription is adequate care.

The good thing is that epilepsy centers seem to be very popular now, and I think things will improve in the future.