Your answer is so sobering,especially because I know you are so well educated and also so articulate. Unlike many of us, you can speak pointedly and in ways a neurologist would/should appreciate when you speak about what you know best -- YOU. I would think that a doctor who is really engaged in learning from the patient would be in a particularly gratifying partnership with you as patient. I don't like to think it is old fashioned of me to think a significant part of the job of doctoring is to learn from the patient!
does it seem like your Neuro does a lot of guess work too?
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I think this must be a rare breed. Unfortunately, many doctors aren't trained in listening -- and those who are may be hampered by the time constraints that the modern health insurance system can impose. I think there's probably frustration on both sides, but the patient gets the worst end of the deal, and is required to do an awful lot of work just to get a foot in the door.
There was a recent study that said doctors who do cataract surgery on the elderly tend to prescribe unnecessary and expensive pre-surgical tests. The study went on to conclude that patients should be more informed and less accepting of the tests these doctors were prescribing. My jaw dropped when I read that -- why should the burden be on the patients? Why can't we count on our doctors to have our best interests at heart?
After years with my neuro, and many times where I feel like he wasn't listening, I now feel like we have an understanding. When we talk, I feel like he knows I've done research now and respects it.
He has finally admitted that neurology and treating E is not a clear science, and it is often trial and error. Just his admitting that was, for me, a victory of sorts. Now I feel like we can move forward both understanding what the other had to offer and what his limitations may be.
He has finally admitted that neurology and treating E is not a clear science, and it is often trial and error. Just his admitting that was, for me, a victory of sorts. Now I feel like we can move forward both understanding what the other had to offer and what his limitations may be.
I've only ever had one neuro ever (out of the dozen or so over 30 years) who actually listened and valued my input. And he was not even really my neuro, he was a friend of the family who happened to be a neuro who wanted me to be in a study he was doing at a time when I was going without health care so I was willing to be a lab rat.
I've made an appointment with the traveling doc who comes out island hopping for June. We'll see if s/he is any different.
I've made an appointment with the traveling doc who comes out island hopping for June. We'll see if s/he is any different.
Thanks, but I did see other neuros through the years (when I was frustrated about lack of results and when I felt he wasnt listening) and my family wanted me to move on from my current doc at one point, but I felt he knew that side effects were my primary concerns, and everytime I saw someone new, they weren't hearing my concerns about drugs and side effects. They couldnt get past the seizures, and I felt I was always starting over with 'yes, but lets talk about your seizures.'
So, its better now, and he is more open to alternative stuff, that he used to scoff at, but I think I've gotten more realistic as well. Only took 15 years!
I get the picture. I myself have seen a number of doctors and have decided that the status quo is my best bet for the moment. However, I do fork out $35/mo to an internet website where I ask specific medical questions of doctors whose answers I then use to fill out and check out the epidemiologist's message. Some of these doctors' answers have been very important to me. One reason I stick with the current epidemiologist is because she works in a hospital neurology department that I respect.
Awesome Mama
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I'm so glad its not just me...not that I'm glad its anyone...
The clinic I went to for years has changed, they no longer have neurologists that specialize in E. I wish they would have told me that when I returned to them 3 years ago! After trying a couple more meds my doc finally sent me to an E group. I start next week, another 2 hour EEG, which I'm sure will show them what all the EEG's have shown over the past 30+ years...brain abnormalities
I coulda told 'em that...
My rant over with, for many years I had a fantastic doc that actually listened to me, respected my choices and would consult both myself and "Mr. Nice" before determining the best course of action.
It will be interesting to see what happens next week.
Question for you all-Does anyone else have a difficult time paying all the medical bills??
I know $$ can be a touchy subject, so don't answer if you feel uncomfortable, but our insurance premium went up, our deductible went down, but it still costs hundreds for appts. With one income its really hard, our ends rarely meet...Any advice??
The clinic I went to for years has changed, they no longer have neurologists that specialize in E. I wish they would have told me that when I returned to them 3 years ago! After trying a couple more meds my doc finally sent me to an E group. I start next week, another 2 hour EEG, which I'm sure will show them what all the EEG's have shown over the past 30+ years...brain abnormalities
I coulda told 'em that...My rant over with, for many years I had a fantastic doc that actually listened to me, respected my choices and would consult both myself and "Mr. Nice" before determining the best course of action.
It will be interesting to see what happens next week.
Question for you all-Does anyone else have a difficult time paying all the medical bills??
I know $$ can be a touchy subject, so don't answer if you feel uncomfortable, but our insurance premium went up, our deductible went down, but it still costs hundreds for appts. With one income its really hard, our ends rarely meet...Any advice??
1dayatatime
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I've come to realize it's a 'craps shoot' for the doctors as well. Remember they have a license to 'practice medicine'
There are soo many different types of nuero disorders, there's so many uses for all the meds. I have daily headaches, a lot of times they lead to migraines. I take Limectal, my doctor didn't understand why I was getting so many headaches, they also use Lamictal for migraines. Doing my own research I have recently found that headaches can also be a side effect of the Lamictal. It's a guessing game.
There are soo many different types of nuero disorders, there's so many uses for all the meds. I have daily headaches, a lot of times they lead to migraines. I take Limectal, my doctor didn't understand why I was getting so many headaches, they also use Lamictal for migraines. Doing my own research I have recently found that headaches can also be a side effect of the Lamictal. It's a guessing game.
1dayatatime
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I might be easily amused but........that's a crack up!
VooDoo would probably be cheaper.
VooDoo would probably be cheaper.
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You can ask your dr if he has any samples of meds that he can give you. This won't cost any money because you won't be charged for them. My neuro does this if he has any samples available for meds that I'm on.
Awesome Mama, Besides what Valerie suggests, I am thinking you might look at the Epilepsy Society website. It might direct you to people in your part of the country who are knowledgeable about reducing costs in relation to Epilepsy. I am so glad to know that Mr Nice is with you! Good luck.
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What's the use in trying another med when you there is not a med out there that will control you. I'm med resistant to so many different drugs and there all in the Tegretol Family except for the Original Tegretol. Being refractory doesn't help it only makes thing worse for me I'll never be under control.
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Awesome Mama
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Well, kids, I had my 2hr eeg and now they want to schedule and inpatient, 5-7 day eeg...yeah, like I can afford that! 2 of the 3 previous E clinics I went to have been "unable" to find my records...hmm??? HIHo HIHO its off to the doc I go! At least now I have an epileptologist who will listen when I say "no thanks, it costs too much" and respected my choice to go off of Vimpat! Hmmm, I wonder if there's a Christian version of voodoo???
Oh Awesome Mama! Oh dear. The one thing I can say for sure is that the two out of three previous E clinics who cannot find your records are breaking the law. Does that matter? It does, damn it, it does. Sounds like the epileptologist has good sense, which is a blessing. Take care and keep in touch!
I am trialling Fycompa, which is a completely new medication in terms of how it works. If you haven't already, research this one and ask your neurologist if it might be worth a try.