Todays patients guinea pigs for tomorrows

[Tony Murray]

 I went through side affects of meds and dr.s refused I was rite with findings Drs witnessed side effects and said it was something else. I went by my findings of side effects and proved them wrong. they admitt 2 screwing up then deny it. They treat us like we know nothing and they're always right. I've come to believe todays patients guinea pigs for tomorros. That's why I'm not on here often. Even the owners of this sight only want your info for thier benafit and not yours. Remember we're guinea pigs for not all but so many of them

[Patti]

 Can you imagine  doctors who study the brain and don't know how to say "I don't know?" Do they think we're that stupid? I was in the beginning, not anymore!!!!

Patti

[Patti]

My doctors are still screwing around with my light sensitive myoclonic seizures because they haven't done the right testing. I keep telling them to slow the light down, but NO!!! I have them for 6 years. The electricity builds up in my brain and goes to my brain stem then down the spine. Once it goes to the brain stem the electricity doesn't show up on the EEG. If the light is too fast, the electricity will get dumped way to fast. All I hear after six years  is stay off the computer, well, duh!!! The plan was to help me stay on the computer with pills, glasses, etc. All I want is the electricity on an EEG. Is that asking too much? Oh, the new doctor in the office said there's no way of telling if it's in the spine or pseudo? How can photosensitive epilepsy be pseudo? I had to quit school( I still have to pay the loan), the seizures screwed my shoulders up and I needed surgery and he's telling me the seizures might be in my head and not my spine! Sure, I believe him! What the F would cause psycho light sensitive seizures????? Especially since I'm really into computers. I'm tired of the BS and I refuse to put up with it. I know how to capture the electric and it's sad that the drs don't listen. As long as i get my pills to control the seizures, I guess for now, it'll do.

[Patti]

Oops, that rant was off topic, sorry. I've been on a lot of medication that didn't work and had side effects. I'm on medication that works , but I'll put up with the side effects if it means being seizure free.

[Tony Murray]

I've been following my history with Epilepsy. Including the meds and side effects. A lot more recently (last few years). I've come across a lot of helpful information by talking with others and doing what research I can. Obviously we all know more about our selfs than our dr.s do. How ever, I've come to find out that a lot of dr.s are only focused on stopping the seizures. Yet,their job is to control the seizures and look out for anything the meds may cause. That includes the side effects of the meds. Several past dr.s looked past the side effects I mentioned and they witnessed. When telling them of less seizure activity they insisted on going up on dosage and trying other meds. They over looked my notes of side effects. Carlton,you metioned that the side effects are by law considered part of our disability and I understand. What about being placed on 20 different medacines? I have the names of all the meds I've been placed on and can only think of 1 dr. that cared. Pretty scary

[Hubert]

RE: Obviously we all know more about our selfs than our dr.s do.

I only believed that in my younger years, below the age of 14 or so.  That came to a screeching halt when my neurologist suddenly died at a fairly young age.  I had heard he was a sufferer himself, but could never get that confirmed.  Anyway, I KNEW he was deep into research and set up a huge (at the time) organization that became part of the town's hospital and still operates to this date.  His partner took over where he left off, although much of the research was deligated to the nearby universities and labs as it grew in so many directions.  I've bought books used by those in medical school (some have text that takes me a while to absorb) and searched for more explanations and breakthroughs, although I'd NEVER put myself ahead of my neuros or most doctors.  I'm just not up to par.  I may well understand much of the feelings & pains & loose marbles associated with seizures that some probably only grasp what they are told & read & see, but I'd never swap places with them.   Yes, experience counts, too.  But young doctors are also refreshed with newer information and discoveries. 

Be sure to ask your doctor when s/he prescribes you a new one whether or not you should continue taking the previous.  S/he may mean for you not to take A if given B.  Some drugs collide and can do worse when mixed.  You should ask, and get a book or go online where the drugs are defined and described.   Even a good pharmacist can often tell you that.   Just be careful...

[Susie Rouis]

I used to feel the same way as you do. But about 15 years ago, I changed that. Now, on the very first visit with a new doctor, the first thing I say to them is "my favorite questions are why and how come. I am going to question everything you say. If you don't have an answer, are you willing to say you don't know? If you can't handle this, I won't waste you time and mine and I will find another doctor." Well, its worked. I have walked out on quite a few doctors who said they can't handle it. But I have been able to find good doctors who don't treat me like a guinea pig and are more than willing to listen to me.        

[Tony Murray]

BRAVO!!! That's the best thing to do Susie. You know your body better than anyone else. I do not mean to put dr.sdown in anyway. From my experience the dr.s are going to play it by the books and continue to change the meds as they should. On occasion we stumble across dr.s that listen to us and other patients of all kinds. They compare your notes and spend extra time instead of writing a prescription and asking for the next patient. We as patients know our body best, and in order to notice a difference for the better, we must follow up on meds and side effects. We must keep notes and compare them. Share your notes and compare them to others. Tell your dr. of your possible findings and ask thier oppinion. BRAVO!!

[retroman73]

I'm sorry but I think this is a pretty negative view.  Yes, to a certain extent the medical profession learns for the patients of today and I guess we are "guinea pigs" in a way.  The other side of it is there is ultimately no substitute for actually trying and doing things.  Medicine would not be where it is today if it weren't for the patients of the past.  All of us are benefiting from the patients and doctors who went before us. 

 

We did not have transplant surgeries until 1968 and the first ones had pretty lousy success rates.  Patients went through rough and painful surgeries and did not live long.  I guess they were guiena pigs in a way, but people now live many years with transplants and it continues to advance.  Surgery in general has gotten much better...it used to mean many days and often weeks of being bedridden in a hospital, this is often not the case now.  I had surgery on my right shoulder to repair damage from a fall out of bed from a seizure; I was in and out the same day and back at work the following Monday.  40 years ago brain surgery was only done in cases of utter desparation such as a brain tumor and wasn't an option for epilepsy treament for most purposes; today it is.  At the time I was born (1973), NONE of the medications that I currently take had even been invented yet.  That's important too, because of the few that were available back then, I'm allergic to one or two of them and another I know does not work.   Heck, even most of the medications available in 1990 would not keep me under control.  It is only advances in the past 20 years that are keeping me able to hold a full-time job and live a relatively normal life. 

 

All of us get frustrated, myself included, when we deal with side effects and when we go on the medication merry-go-round.  I take three medications and I sure don't like the memory side effects or the fact I am often drained of energy.  I'm considering trying to switch later this year to get around the topamax side effects but not sure I want to risk it.  The main point though is I know I am in far, far better shape than I would be if I were the same patient 40 years ago.  If my choices were dilantin, depakote, tegretol, or phenobab I would be hopeless and essentially disabled.  As it is, I am 99% controlled.  Epilepsy care IS advancing...we just need more research so more people can be helped.  I just wish it got as much attention as diabetes or cardiac conditions.  That's what we need - more advances in research so there's better treatments that cover more people and with less struggle getting there. 

 

Jon

[Tony Murray]

I've had epilepsy for over 45 years. I've watched dr.s come and go. You don't see as many that are focussed on spending more time with the patients than you did 30 years ago. Have you any idea how much dr.s make from drug companies for prescribing thier drugs. A dr. that now heads one of the top hospitals watched as I suffered a major side effects. I read up on the side effects. With the help of my pharmacist we found out 1 of the meds was causing DVT. The dr. refused to listen and continued the med. That same dr. later said,what can I say,I screwed up. There are great dr.s out there. Then there are those that are in it for the money. Why do you think you see more commercials for malpractice law suits

[retroman73]

Well...I am a lawyer, and I can tell you why you see commercials about the malpractice suits.  Trust me, many lawyers are in it for the money just as much as the doctors might be.  It isn't about wrong or right anymore, it's about dollars and cents, and about expediency.  People don't always sue or win cases because they are in the right, either.  Plenty of people beleive they are but you can find people who do outrageous things and still blame it on other people - and they win a good part of the time. 

 

I agree there are some poor doctors out there and I am not a fan of all medical companies either.  As one common example, there's a reason why epilepsy research lags behind diabetes research - look at obesity rates.  America is overweight, diabetes rates are skyrocketing, and there is money to be made in diabetes care.  Epilepsy, on the other hand, affects a relatively small and stable-sized group of people and so there just isn't as much interest in research.  There is some, but not like there is in diabetes or cardiac care.  Research is driven by profit, not by good intentions...unfortunately.  I don't agree with any of that.  I was just saying I do think some progress continues to be made despite all the problems and obstacles and I am glad for what we have.  It's an imperfect system but I can see progress over the past 20 years for certain. 

It gets me frustrated at times too...but we just have to try to keep our heads up and hope for the next breakthrough.  Plus, continue to organize and further educational efforts as that will help encourage more research. 

 

Jon

 

  
 
Tony Murray said:

I've had epilepsy for over 45 years. I've watched dr.s come and go. You don't see as many that are focussed on spending more time with the patients than you did 30 years ago. Have you any idea how much dr.s make from drug companies for prescribing thier drugs. A dr. that now heads one of the top hospitals watched as I suffered a major side effects. I read up on the side effects. With the help of my pharmacist we found out 1 of the meds was causing DVT. The dr. refused to listen and continued the med. That same dr. later said,what can I say,I screwed up. There are great dr.s out there. Then there are those that are in it for the money. Why do you think you see more commercials for malpractice law suits

[Tony Murray]

Thank you for your respectful reply. Every little thing helps. Including our responces. Enjoy your day Jon.
 
retroman73 said:

Well...I am a lawyer, and I can tell you why you see commercials about the malpractice suits.  Trust me, many lawyers are in it for the money just as much as the doctors might be.  It isn't about wrong or right anymore, it's about dollars and cents, and about expediency.  People don't always sue or win cases because they are in the right, either.  Plenty of people beleive they are but you can find people who do outrageous things and still blame it on other people - and they win a good part of the time. 

 

I agree there are some poor doctors out there and I am not a fan of all medical companies either.  As one common example, there's a reason why epilepsy research lags behind diabetes research - look at obesity rates.  America is overweight, diabetes rates are skyrocketing, and there is money to be made in diabetes care.  Epilepsy, on the other hand, affects a relatively small and stable-sized group of people and so there just isn't as much interest in research.  There is some, but not like there is in diabetes or cardiac care.  Research is driven by profit, not by good intentions...unfortunately.  I don't agree with any of that.  I was just saying I do think some progress continues to be made despite all the problems and obstacles and I am glad for what we have.  It's an imperfect system but I can see progress over the past 20 years for certain. 

It gets me frustrated at times too...but we just have to try to keep our heads up and hope for the next breakthrough.  Plus, continue to organize and further educational efforts as that will help encourage more research. 

 

Jon

 

  
 
Tony Murray said:

I've had epilepsy for over 45 years. I've watched dr.s come and go. You don't see as many that are focussed on spending more time with the patients than you did 30 years ago. Have you any idea how much dr.s make from drug companies for prescribing thier drugs. A dr. that now heads one of the top hospitals watched as I suffered a major side effects. I read up on the side effects. With the help of my pharmacist we found out 1 of the meds was causing DVT. The dr. refused to listen and continued the med. That same dr. later said,what can I say,I screwed up. There are great dr.s out there. Then there are those that are in it for the money. Why do you think you see more commercials for malpractice law suits

[Susie Rouis]

Thank your retroman for your informative reply as to why epilepsy research lags behind. I have always wondered why I hear so much about other health problems and nothing about epilepsy. I hope someday soon, they take more interst in the reseach of epilepsy.