Help! My Specialist Physician Doesn't Believe Me! :(

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Hi! I was diagnosed with Temporal Lobe Epilepsy and Right Frontal Lobe Epilepsy approximately two months ago. I have been extremely ill for the past eight months and have just found out that I actually have Lupus, amongst many other things. I was in Hospital, about a week ago, and my Specialist Physician told my mother that my symptoms were all in my mind(meanwhile, I actually have LUPUS and the bloods showed that I had organ problems, infections and severe dehydration!)! She then told my mother that she had seen me have a seizure and that it wasn't a real seizure at all and that I don't have Epilepsy and I don't need to take the A.E.D.s anymore! :( Excuse me? I had my seizure at 02:30 in the morning in the Hospital and she was at home, in bed!, so how can she lie like that and say that she had seen me have a seizure when she didn't? I have had approximately thirty seizures, which almost all of my teachers (including the school nurse-almost every time!) and friends have seen, as well as my mother! The inside of my mouth is raw from being bitten and I am TERRIFIED about her taking me off my anti-epileptic drugs! She's not even my Neurologist, but she just went and took over his job! :( She even changed my A.E.D. from Lamictin (Lamictal/Lamotrigine) to Epilim (Sodium Valproate) and then didn't do any drug monitoring! :( My mother is FURIOUS with her and I just don't know what to do! My Neurologist will only be back at work on 8th January, but I am seeing my doctor on Friday (tomorrow), so I will speak to him about it! I am just so upset and so shocked that a doctor would do something like this to a sixteen year old child with Epilepsy! :( Please help!

Comments

Re: Help! My Specialist Physician Doesn't Believe Me! :(

Submitted by Holly Ann on Thu, 2006-12-21 - 02:24

I had sort of the same situation when my seizures started. I was in labor with my son and the doctor told me that I'd never have one again. I was 22 and afraid. I lived out in the country and my aunt would rush me to the hospital, they'd say she didn't have a seizure. I thought what idiots, my toungue is bleeding and I'm in a disoriented state. You can't bite down on your toungue that hard. They gave me different meds and I was seeing a neuroligist that said your having psuedo seizures. I think your depressed. Of course suddenly aquiring a seizure disorder is going to affect you.I divorsed my husband and was a new mom. But to fake a seizure, get my liscence taken away, especially living in the country was stupid. The doctors could not find anything and at least gave me some info. Go to a university hospital. I went to slc, UofU and only saw a neuro there but he was really smart. I really trusted him, any other doctors didn't now what to do except act annoyed.He had me do some tests and finally they found something. Me brain likes to have a personal 4th of july in my head, lasts for days, but absolutely nothing wrong with my brain.So I knew I couldn't ever have brain surgery cause it moves around.I went to visit my mother in new mexico and had a seizure, was taken to the hospital and the neuro new what it was and how to treat me.So I moved here and he told me that I need a referral to see him and gave me the name of one of the GM's.Now I go to one place for all my medical care. A university hospital. My GM finds the right kind of doctor for whatever is that I need.My neuro left last year and I needed to pick another one and the only eptoligist was a woman that I had a bad encounter with. So I knew who the head of the department of neurology was and knew about my epilepsy also so he is my doctor.But I go to the hospital alot and the neuro floor all know me, residents too. I have to stay in a sac unit until I come out of status.The doctors don't question me, sometimes I'd get an idiot that would tell me,"you know if you dont take your meds your gonna have a seiure". Like I purposely didn't take my meds. I look them straight in the eye and ask them if they have my blood results. Its mostly residents that do that now that are new.I also now they have advocates to help if you have a problem which I use, like the woman above said to me the first time I met her that I was just trying to get attention and abusing the system! I just saw her two months ago and it was her turn to be an attending. I was laying in my bed and she said,"I'm a democrat and you can't just come in here and expect to get a bed when others were waiting.I have a direct admit and she went on to she that my mother uses her job to harass the hospital into getting me a bed.My mom works for a medical staffing company but she said that to a room full of people.I got her in lots of trouble and she is never supposed to be arround me again. Some doctors have really big egos and think they can do whatever they want. To you are just a person and like that doctor I had she is a professional and people will believe her before you.I make them document everything that goes on so if someone adds stops in written down and to my knowledge they are to gain permission from you/or gaurdian before they can change anything because it may be dedtrimental to your health and your docs should have some kind of relationship with each other to find out whats in the best interests of your health.They should be familiar with you or your history. I hate it when a doctor tells you how you feel. Only you know and they should respect that, plus it gives them information to better serve you. Its the only way I've found that doctors even if mad at you treat you with respect. They wont do it again either

Re: Re: Help! My Specialist Physician Doesn't Believe Me! :(

Submitted by IloveHistory on Thu, 2006-12-21 - 07:41

Thanks very much for all of your advice; it is sincerely appreciated! :) I saw one of my doctors today and he told me that my Specialist Physician was lying and not to pay any attention to her because she is not my Neurologist. He told me that my Neurologist is handling my Epilepsy and therefore my Specialist Physician has no right to interfere. I have been evaluated by a Psychiatrist and I have no psychological or psychiatric problems whatsoever and the Specialist Physician knows that, so she's just being full of nonsense! My Paediatrician/Paediatric Cardiologist, who is my main doctor, my Neurologist, my Psychiatrist (he is just helping me to cope with my illness and all of the nonsense that I get from the medical profession!), my Urologist, my Rheumatologist, my Dermatologist and my E.N.T. are all working on my situation together and they are not impressed with my Specialist Physician and are no longer dealing with her because of her attitude. Thanks again for all of your help and keep well! :)