Do Neurologists Belong to the Forums?

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Bidwell - Thank You for your support and I am so sorry that you also had a bad experience. Hugs.
 
Thanks to all who have commented with support and offered me other perspectives.

One final word - I did not intend any disrespect toward those of you who take Keppra. I hope all meds work for each of us. I pray for minimum to no side effects for all of us.
 
Hiya Cuppycake!

Thanks for starting this thread. It really got me thinking.

I'm on the end of day one of my VEEG right now. Your thread and Bidwell's got me thinking that keeping it all written down as it happened might be helpful. We'll see if I'm comps mentis enough to do that in a few days. http://www.coping-with-epilepsy.com/forums/f23/hamsters-tale-my-veeg-journal-25608/

I can see how with minimal sleep, all this goopy sticky stuff in your hair, etc. everything could get irritating and become something where communication would totally break down. If you add an insensitive jerk for a doc into the mix that would really tip the balance. But then nothing ends up getting accomplished and that is a big waste all around.
 
I used to always say that the best way to cure Jon's seizures was to hook him up to an EEG. I remember one time he was having multiple seizures daily, but during his overnight EEG he had none! First night in a month he'd not had a seizure.
 
KarenB said:
I used to always say that the best way to cure Jon's seizures was to hook him up to an EEG. I remember one time he was having multiple seizures daily, but during his overnight EEG he had none! First night in a month he'd not had a seizure.
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Hah! So true. I've never had one "on cue" and I slept great last night.
 
Cuppycake, I'm sorry that you had such a bad experience. I don't know what I would have done if I was in your shoes, but I'm pretty sure that I would have walked out as well. I would think that reading and/or belonging to some of these types of forums would be a great source of info for doctors.

Alohabird, you're awesome. I can feel your positive energy flowing through your posts. I'm very jealous of where you live too, but I won't go there right now!

Cuppycake, I agree with others on here as well. If you don't think your new doctor has your best interests in mind, you can try to find another. Maybe your new doc has a game plan that he just hasn't described to you and his staff is disorganized because he has new staff members?? Probably not from what you have told us. The only good thing my PCP ever did for me was refer me to my Neuro, I love him.

I am very sensitive to med changes and get very apprehensive when one of my docs wants to try something else. I know that everyone has different experiences with different meds. Good luck with everything.
 
Hey Everyone... Haven't been on the boards for awhile but want to Thank You all for your support during my original post. :hugs:

Last week was my first follow up after the Video EEG (4 months). Most of you wisely recommended accepting the situation and cutting my losses. And that is what I plan on doing once I find a new Neurologist. :woot:

The situation was disappointing, but I have a prescription that will hopefully last me until I find a new doc. There was a lot of drama in the waiting room that didn't involve me, but was really unprofessional. I've always thought the neurology team is supposed to be your first line of defense/understanding. I guess I was unrealistic. The lack of respect shown the patients in this office is really disheartening. But I know it isn't that way everywhere.

I did have some breakthrough seizures since time in the hospital...which worries me since I wasn't having them as often on my old medicine. Doc asked if I'd missed meds, etc. I explained that the family had 4 deaths in September. Including my dear brother and sister-in-law. His response was, "stress happens. Normal people handle it. They don't have seizures because of it".

This is why I'm leaving.

Anyway, that is the update. Hope all of you are well in health and spirit.
 
Wow, that comment is beyond the pale. "Normal" people don't have epilepsy! I understand why you'd want to change neurologists if this one isn't aware that stress induces seizures!

And stress seizures remind me of a tragic case going on in my town. A man was arrested for rape, and the preliminary hearing was last Monday. Unfortunately, the victim had a seizure after she arrived in the courthouse, but before the hearing began. EMT arrived and gave some sort of treatment, but rather than rescheduling the hearing, the woman was brought into the courtroom in a post-ictal state, weeping and very fearful of seeing her attacker. And then, when they began to question her about the rape, she was unable to remember all the details or whether or not the sex had been consensual (and who could....minutes after a seizure???). And then she had another seizure in the courtroom and had to be taken out on a stretcher. So, the judge called an end to the hearing, and let the guy go. The D.A. has now dropped the case.

This same guy most likely killed his wife a year ago (her naked body was found on the side of the snowy road about a mile from their house). He's apparently getting away with both rape and murder, because both his victims were unable to testify. grrrr!!
 
Your doc sounds rude at best and unprofessional at worst. I hope you can find more empathetic physicians soon who will collaborate with you to find the best treatment.
 
cuppycake21 said:
I explained that the family had 4 deaths in September. Including my dear brother and sister-in-law. His response was, "stress happens. Normal people handle it. They don't have seizures because of it".

This is why I'm leaving.
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I certainly hope you are leaving. The sooner the better.

On a professional level that comment is anything but professional. On a purely personal level, that doc is just an A$$. Sorry but no other word fits.

Good to hear from you, cuppycake and my deepest condolences on the losses your family has suffered. I hope the new year is kinder to you.
 
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