So here is a good story for laughs for all you fellow seizure peeps!
I am new to the "Seizure World" I was recently hospitalized for what was thought to be a stroke. A neuro is called in for consult and takes over my case. After some test he happily annouces that I have had a massive seizure and begins to tell me that all these years I thought I had migraines were instead seizures. So he proceeds to put me on keppra 500mg x3per day. Says I'll be back to normal in a week. Turns me over to the Physical Medicind doc who is in charge of my rehabilitaion...since I couldn't walk(weakness on entire left side) or talk and couldn't focus to see at all.
So fast forward 4 weeks to my first neuro appt since being released from hospital...
Neuro says that I should be 100% by now..why aren't I? I say you tell me! Personally I thought given how I came home from hospital I was doing pretty darn good!
Neuro preceeds to tell me that my keppra should have taken care of ALL SEIZURE activity and that since it hasn't I should go see the NeuroPsycologist that evald me in the hospital(who said Iwas mentally very healthy...I was so glad she cleared that up...I was so worried I wasn't! LOL)
So I proceed to ask him if I need a different or stronger seizure med...Neuro says that the Keppra is enough and seizures don't work like that......if the Keppra was helping(which the EEg showed it intially did) then it doesn't just stop working...so I say but isn't it possible that it worked at first cuz it helped to calm my brain with the MASSIVE loading doses you put me on in the hospital and now my brain is use to that particular drug and dose and it is saying it isn't enough? He proceeds to belittle me by NOT answering mine or my husbands questions and only gets hot headed because we challenged him!
He proceeds to push the psych bit on me because my speech wasn't 100% and my walking was still unbalanced..although without the assistance of the walker or anyones help! He further more got irritated when I reminded him that I didn't come looking for him or the siezures he agreeded to take on my case and gave me that dg and I was only trying to not only understand what had happened to me but WHY and how to prevent it!.....further more I told him that I know peeps who are on many different seizure meds at one time and that not all meds work for all seizures and that he hadn't evald me for what type of seizure I had even had! Then my hubby proceeds to ask him about the stroke that the ER doc was adament I had even though the CT didn't show a bleed...he says I didn't and that was that...so after much debate he finally admitted to us that neither he nor the hospital had the "right" testing equipment to further eval me and that I needed to be referred to a specialist else where...like Cleveland Clinic....so I think that maybe he is the crazy one since he couldn't just admit that HE WASN'T SURE what to do or why I have continued to have issues...and 3 hours after this visit I saw my Rehab doc also for the first time since hospital and he was EXCITED at my progress in my speech and muscle coordination in left side!! He further said that another month and I'll be good as new...a far cry from the 6 months that he had projected it to take! Thank God for him! The neuro had me feeling like it was all in my head and I was faking it all because his precious Keppra isn't working...so Mr neuro I think you need a pysch because you obviously don't know your butt from your head!
One last thing....we asked him if there was a chance that the MRI didn't pick up on something and did he pysically look at it...he said the MRI is like God and he believes he did look at it! So we ask if there is another MRI or something like it that we can do for a follow up and he says no...well little ol ignornant crazy me found all kinds of research today that clearly states a CT and MRI with contrast should have been done on me and neither were!
So frustrated with docs who DO NOT LISTEN TO THEIR PATIENTS!!!