I Can't take these siezure-iype. feejings!!!

[Ponygirl]

Enough, already!!!!!!

Phyllis

[houghchrst]

((((((hugs))))) I haven't been here much lately but what does your doc say?

[Ponygirl]

Thanks, sweety!!

She changed my dosage, a while, back and this really just started so, I'm giving a call
on Monday. She did say, if this dosage stopped working, we'd be trying something, so, we'll
see what she has in store for me, next??!;)

Phyllis

[Porkette]

Hi Phyllis,

When you see your Dr. tell the Dr. to do a DNA test on you and then they will be able to find out what AED will help you with the least side effect.
I wish you only the best and May God Bless You!

Sue

[Tattoo2]

I know that is frustrating for you. Sounds like you have had some med changes already. Is your neurologist a general neuro or is she/he an Epileptologist who has done the Fellowship in Epilepsy or poss neurophysiology at the least? There will be that Certificate on the wall saying they have done that specific Fellowship. That makes a huge difference in the type and quality of care and you probably know all of this from all the posts about this on this forum. General neuros can and will only give you pills and more pills and those aren't working. Do keep us posted. Tattoo

[Ponygirl]

No worries, Sue!

I never get to have an appt., without, having to pay a visit to Dracula's lab!...lmao
Seriously! Thank you so, very much, again, for all of the very knowledgeable advice, you 're always
so willing to share with all of us!!:) I don't know what, we'd do, without, you!:)

Phyllis

[Ponygirl]

Thank you, Tattoo! My Dr. is my Pcp. I see her for everything. *But*, I really don't feel comfortable, telling
her, I want to see someone different. I know, that's not a good thing for me, so, do you have any
suggestions for that? Btw, I see her on May 4th.

Phyllis

[Tattoo2]

OMG!! I am soooo sorry your pcp thinks he/she can treat this very individualized specialty with ABSOLUTELY NO EDUCATION IN THIS VERY SPECIALIZED AREA!!! He is allowing this to happen by not putting his patient first! HE WOULD HAVE REFERRED YOU IF HE HAD YOUR BEST INTEREST AND HEALTH AS PRIORITY! This makes me sooo mad!!! First, this is only about you and not at all about him!!! He makes it about him by not referring you to neuro!! Lots of docs including general neuros are just like this when they have nothing to offer the patient, they still hang on and don't even tell you they can't help you any further. Your PCP never did need to even start treating you unless you were referred back to him from an Epi. If you have not been to Neuro, shame on this so called doc! You seem to be only a means to an end!!! You deserve soo much better!! Second, you you want a PCP who has YOUR best interest as PRIORITY!! NOT HIS!! NEVER HIS!!!!! Sounds like your interest is not at all first so why trust him as PCP? He will get reports from all visits that he made the referral for. He wants it all and has nothing to offer you for your epilepsy! You are the one to suffer at his negligent selfish hands! There is no other way to view it from what have shared. You deserve better!!!!! TELL him when you go that YOU WANT TO BE REFERRED TO AN EPILEPTOLOGIST! ( NOT A GENERAL nEURO!!) Do not ask. Tell him!! You are his/her customer too! PCPs are all over and want business. If he wants yours, he needs to show that your quality of life and health are his priority by reffing you to one who can actually offer you care he can't!! The Family doc I am dong clinical with now seems to be trying to do the same thing. We get calls about the patient being in status and she is not capable of treating that patient. She ordered two tablets of klonapin (if one is seizing and not aware of surroundings, can they still swallow? I sorta doubt it!!) The patient suffers! They are not the ones to manage your epilepsy at this point. Tell him. Your quality of life and health matter much more than his ego!! You have to be your own advocate. We all do! Sorry if I sound angry, but I hate docs to do this. They do NOT have the right and do have the responsibility to refer you if he is not able to help which he is NOT. Where are you located? GO to the NAEC website to find a Comprehensive Epilepsy Center near you but you still have to peek inside and look around to make sure this is a good place too. We all have to do that. Tattoo

[Ponygirl]

Whoa!!!!!!!!!!!!!!! Hold on!!!!!!!!!!!!!

she DID, hook me up with a neurologist! I have a Appt. with her on May 4th!
Actually, My PCP has been EXCELLENT with everything, else and I'd *never* give her up!
I think, you might have, misunderstood??

Phyllis

[houghchrst]

Phyllis just make sure that you understand that your PCP is really nothing more than a conduit to all the specialists you should be seeing. Basic medical care for the everyday Joe is one thing a PCP can handle but they really should not be treating you for things a specialist should be seen for and then only if they are continuing the care recommended by the specialist. Good luck with the neuro and make sure you ask lots of questions and demand exact answers.

[Ponygirl]

Chris, I'm not sure, I get it?? I seeing a *neurologist* and *everyone*, *is*, working together.
They're in the same hospital and do, communicate with each other. I mean, if, I shouldn't be seeing
a neurologist for my siezures, then, who should I be seeing? Are you saying, I'm not seeing the right
type of Dr.??

Phyllis

[Travis from MN]

I think the suggestion back a few posts was regarding an Epileptologist. The short definition of that professional is a neurologist with extra training for Epilepsy. They really do make a difference!!

I've had a few neurologists, but my last two have been Epileptologists. I tell you, they make all the difference. It's not the going through the list of medications seeing if the next one works.

Hope it gets better,

--Travis

[Ponygirl]

Wow!!!

Really, Travis?!? I seriously, always thought, my neurologist was enough!?! Okay!
These *horrible*, *horrendous* sesations *need* to *go*, so, I'm looking into it!!

Thanks so much for your input!!

Phyllis

[Tattoo2]

Many of the posts on this forum mention the importance and great benefit of an Epileptologist in our care. Search for EPileptologist. With the very real evidence-based statistics re epilepsy medications and seizures being 'once one medication fails to stop the seizures, there is less than a 15% chance ANY of them will ever stop them', the neurologists try this one and come back, then we'll try that one. add that, etc etc. All the while seizures are continuing and kindling can take hold while the area of involvement grows leading to worsening seizures and a negative effect n the brain tissue. Epileptologists are the only ones who have other tools in their tool box to help stop seizures general neuros do not have anything but more pills that just may not ever work. What state are you in? Tattoo.

[Ponygirl]

Tattoo, I'm in Mass,

Phyllis