I educated my doctor!

[Crystal11]

Hello everyone- I have written several times about my seizures giving me a hard time etc. I just got a neurologist, finally but don't get a chance to see him/her until November. I was told by my doctor, the doctor's manager and staff to go to ER the next time I have a seizure, since things are not very controlled with the meds I'm on.
I thought the only thing I could do right now is to see about changing Keppra to Keppra XR and see how things go. I am taking Tegretol XR and that has been very stable and helped a lot. I would rather not be on it- as I have side-effects, but nothing too bad.
So, I go to my doctor and let him know of drop attacks happening and the last one happened in the bathroom two days ago. Scared me bad- so I said, its time to go to the doctor. I should have gone to ER but thought I would live and can go to dr. Hehe.
So I start talking to him about my seizures and he asked if I had petit mal seizures. I said no, not anymore but I do have complex partial seizures and now drop attacks. He didnt know what CPs were- so I explained. He then said that he doesnt do much neurology stuff and one other patient is seeing a neurologist for his seizure disorder/Epilepsy. My family doctor deals with babies, kiddos with viruses, illnesses, infections but not much with seizures. He asked me if I have any involuntary movements in my hands or body and I said no.
just thought it was so strange that I had to explain my seizures to him and how to even dose my Keppra. He wanted to start out at 1000mg of Keppra XR then see how things go. BUT I am already taking 3000mg of Keppra regular right now. So after a discussion with him, we finally got things set and ready to go. He told me again to go to ER as we were walking out. There was a lady sitting there waiting for the nurse and he said loudly that if I have more seizures to let him know. Kinda embarrassing.
The joys of being on Medicaid- lots of family doctors work out of community clinics and have very little knowledge of Epilepsy and medications.
Must learn, must educate!

Everyone take care and be safe
Crystal

 

[Meetz1064]

Oh my

Crystal, that's sort of scary, in a way...........that you would have to have to do that...

 

[Crystal11]

It is in a way- but if I felt that I didn't know enough info etc, then I would go to ER and have them help me. Its what happens with your on SSI and have to go to a more smaller community clinic where neurology is not a big problem for most clients there.
Sometimes you have to educate people, even doctors in order to be safe. Somtimes you have to find out lots of info about your disabilities or conditions.
My doctor is able to diagnos seizures and perscribe meds- but when it comes to other various seizure types, he didnt know about them. He just doesnt work with patients with epilepsy much. I believe I'm am one out of two that he sees right now.
Take care, Crystal

 

[Nakamova]

I've had to educate myself and my doctors, just as you have Crystal. My regular doctor had never heard of the AED med I was taking, and wasn't particularly interested in learning about it. My neurologist and my regular doctor disagree about whether I should have a bone scan done, so I've had to ask friends (who are doctors) for their advice as well in order to make a decision about it.

I think it's one of the more unfortunate consequences of modern medicine in this country -- doctors just don't have enough time to get to know patients in a comprehensive manner, or to get up to speed on all aspects of their patients' health. And there's no system in place that makes it easy for doctors and specialists to operate fluidly as a team.

It's good you were able to fill in the gaps for your doctor, but also pretty distressing that you had to take that responsibility.

Best,
Nakamova

 

[Crystal11]

I agree. It was making me feel as if I could not truley trust my family doctor. It disappointmented me. I think I will be happy when I see my neurologist who does know lots about Epilepsy and medications and best ways to deal with seizures becoming uncontrollable. My Mother had to do similar things- she was taking us to doctors every week for 6 months becuase one doctor said we were going to die of midochondiral myopathy and other diseases that are pretty serious. Mom had to learn a lot about conditions we might possibley have- and had to educate herself a lot, as well as learning when to fulling trust in a doctor. Doctors do have to learn a lot but they mainly focus and become an expert on the illnesses and sickness they treat the most, or the largest population of patients.

I hope things well get better soon. I can remember when my Mom told me that one day, I will have to take over my health and be sure to take care of myself. She gives me strength.

Take care everyone.

 

[Aubrey]

It's weird isn't it? Even neurologists can know a scary- little. A couple of years ago I got to prove to my neurologist that 1) absence seizures really can start when you are an adult, and 2) you can have absence seizures if you have tonic-clonics. Has anybody else heard that one? For proof, I gave a demonstration in his office, as well as showing their unique spikes on an EEG. I was on Tegretol at the time and was having breakthrough T/Cs so I tried to suggest I try a different medicine. He prescribed Klonopin, which I think I may have taken before unsuccessully. I kept hinting around to see if he would suggest Lamictal which I had read a lot about, but no. Finally he referred me to another doctor. Now I have another doctor I like a lot, but even she doesn't know everything. My insurance prefers mail order, and she tried to get them to give me a 90 day supply of Vimpat through the mail. But you can't get a CONTROLLED SUBSTANCE through the mail. You have to pick it up in person and show ID. She didn't know Vimpat is a controlled substance. I did some research on this and I attribute it to a side effect they refer to as "adverse euphoria effect". I interpreted this to mean, you can get high, even though we didn't give you permission. Now this is a controlled substance, but they are happy to give us 300 keppras at a time - and that does not make one euphoric. FWIW - that is a rare side effect and one that I have not experienced.

Off topic, sorry about that. But even neurologists might need some filling in. Every case of E. is so individualized that they really can learn from us and we have an obligation to listen to them, but at the same time learn as much as we can about our own unique expression. I really hope your neurologist is knowledgeable, and willing to work with you - good luck

 

[Bernard]

We are conditioned to think of doctors as all knowing, but they are human too.

 

[Chy Girl]

I know how u feel about having them in the bathroom ive had 3 in the shower!