Sick and Tired of Incompetent Medical Professionals!
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, Sjogren's Syndrome, Fibromyalgia and T.M.J. Dysfunction Syndrome, amongst many other things.
I was in Hospital, about a week ago, and my Specialist Physician told my mother that my symptoms, especially my pain, 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 Anti-Epileptic Drugs 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? The other patient in my ward saw me having the seizure, turned on the lights, pressed her bell and went to call a nurse; she knew exactly who my Specialist Physician was and assured me that she was not there at the time.
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! My Specialist Physician even tried to stop my Anti-Epileptic Drugs, but my Neurologist was furious and stopped her, thank goodness! How can a doctor do such a thing to a sixteen year old child with Epilepsy? :cry:
I saw one of my doctors on Thursday 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 (I was forced to, thanks to incompetent doctors like my Specialist Physician! ) and I have no psychological or psychiatric problems whatsoever and the Specialist Physician knows that, so she's just being full of nonsense!
My Specialist Physician then said that there was absolutely NO WAY that I could have Lupus, in spite of the bright red malar rash across my face and the fact that I fulfill at least half of the criteria! My Rheumatologist was SO angry with her about it because she was, quite obviously, very, very wrong and ignored something so serious!
My Paediatrician/Paediatric Cardiologist (I am sixteen), 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.
My ex-G.P. is another incompetent medical professional. She has a large ego and was jealous because I went to see other specialists (she couldn't help me with my problems and keeps misdiagnosing people) who handled me better and actually discovered numerous problems, which she had over-looked. She then phoned up my Neurologist and told him that my mother had Munchausen by Proxy Syndrome, which is the biggest load of absolute RUBBISH that I have ever heard! My mother is a PSYCHOLOGIST and was FURIOUS about it! The only surgical procedures which I have ever endured were an operation on an inguinal hernia (when I was a few weeks old) and a colonoscopy! My ex-G.P. then told my Neurologist that I was making my symptoms up and that my mind was creating symptoms, etc.! As a result, I had to go and see a Psychiatrist, who phoned up my ex-G.P. and was absolutely FURIOUS with her for accusing my mother of having Munchausen by Proxy Syndrome, when my ex-G.P. doesn't even know exactly what it is and when there is no way that my mother could EVER have such a thing and for accusing me of making up my symptoms, when I had no psychological problems whatsoever and was actually EXTREMELY ill! I have had to listen to my mother crying at night because I am in such severe pain and she cannot do anything about it! My mother sits up with me all night when I am in pain and makes me herbal tea, fills up hot water bottles for me and rubs my aching joints and muscles. How DARE my ex-G.P. suggest such a thing?!
I am SO sick and tired of incompetent medical professionals! I'm sorry that this is so long, but I really needed to vent and was just wondering whether anyone else out there has gone through similar problems with the medical profession?
Thanks and keep well!
Sweetie, I'm sorry you have had to come up against so many bad things this young in your life. I wish I could tell you you were just the victim of a couple of quacks, but the bad fact is that many doctors and other medical professions do not understand lupus, so patients often get misdiagnosed with other illnesses, or labeled as hypochondriacs or even fakes. It's incredibly hurtful and it's probably shortened some patient's lives because they never got the treatment they needed, But at least the doctors who really count know what's going on and are taking care of you. It sound like the one doctor has gone way beyond the bounds of professional behavior. I know you don't live in the United States, but in most parts of the world, patients can file a grievance against their doctors with whatever governmental agency issued the doctor's license. So you might discuss this with your mom and see if it's an option you want to pursue. Is there any way to get this physician changed so that she no is no longer assigned to you?
Thank you SO much again for all of your wonderful advice and support! It really gives me the strength and courage to carry on!
Yes, we can file a complaint against her, but my mother and I decided that it was best just never to see her again and to make sure that my specialists don't send her any doctor's reports. Most of my family sees her partner, who is a good doctor, so we don't particularly want to cause any trouble. My mother had a long conversation with her on the phone, hilariously enough; my mother was polite, but very cold and the doctor was terrified, it was fairly obvious because she knew how much trouble she could get into. The doctor actually phoned my mother (guilty conscience!) to "see how I am"! Wow! When I've been extremely ill before, she has never ever phoned to "see how I am" and then she just suddenly calls out of the blue! :roll:
Yes, I have spoken to my Paediatrician/Paediatric Cardiologist, so if I ever get admitted into Hospital through him, he will make sure that I do not get this particular Specialist Physician. There are four other Specialist Physicians at my hospital and if I ever get admitted through Casualty, my mother is allowed to ask that we don't get this particular physician. Oddly enough, when I was admitted into Hospital, almost two weeks ago, by Casualty, I was supposed to get Dr Hirschson, but because I had seen the other Specialist Physician before, she just decided that she was going to take charge of my case and not Dr Hirschson!
Thanks again and keep well!
I saw my Paediatrician/Paediatric Cardiologist the other day and he had my Specialist Physician's report from a few weeks ago sitting on his desk. I can read upside down and so was able to read my Specialist Physician's first bullet point under 'Causes for Concern'. It said "A very excitable girl with too much medical knowledge from reading too many medical journals!"
I'm sorry, but I have NEVER read a single medical journal in my entire life! Where does she think I get them from? Does she think that I subscribe to 'Medicine Today' or something?! :? :lol:
Obviously, I have some medical knowledge; I do both Biology and Physical Sciences (Physics and Chemistry are combined in South Africa) as High School subjects and I want to be a Neurosurgeon when I grow-up, so obviously I have some interest in Medicine!
My Specialist Physician was irritated with me the other day because she changed my Anti-Epileptic Drug from Lamictin (Lamictal in the U.S.A.) to Epilim (probably Depakene in the U.S.A., but I'm not sure?), so I asked her what the base chemical in Epilim was, but she couldn't remember and had to go and look it up and I think that this irritated her a bit, but that's not exactly my problem, is it? She was cross because I know the base chemicals in the Anti-Epileptic Drugs and she couldn't remember some of them, but that's only because I'm interested in Neurology/Neurosurgery. My Neurologist thinks that it's hilarious that I know most of the base chemicals, but my Specialist Physician thinks that there's something wrong with me! :?
Gees! My mother and I laughed for AGES about this comment! :lol: My Paediatrician/Paediatric Cardiologist also thought that it was very funny!
What is it with these doctors?! They totally "freak" if their patients know so much as one tiny thing about their condition! :x
Keep well! I hope that I didn't bore you, but I just thought that you might like to know! :lol:
Thanks for sharing - you're a lot nicer about this doctor than I would have been at your age. And it's great that you already know where your interests and talents are - plus the experience of having been a patient will make you an outstanding doctor! Do the doctors think your epilepsy might be related to the lupus?
My doctors think that I caught a very serious virus when I was in Austria and they think that the combination of this viral infection and the fact that I was "pumped" with so many antibiotics has caused my Lupus.
My Neurologist thinks that the viral infection, which eventually led to Lupus, caused me to have a bout of Cerebritis, which is what has caused my Epilepsy. Although the Cerebritis has probably cleared up by now, the Lupus is probably causing my Epilepsy to stay. My Epilepsy is not focal, i.e. it does not just arise out of one lobe; I have seizures originating in three lobes - my Temporal Lobe, my Frontal Lobe and my Parietal Lobe and this is why my Neurologist thinks that my Epilepsy was caused by something like a viral infection/Lupus.