epilepsy misdiagnosis

my story starts in 1980 i was 20 at the time after having a couple of faints after a visit to the hospital i was diagnosed with having border line epilepsy but i was told this could be controlled by drugs and i was given a drug called tegretol a few days after taking this i had a fit then i stated having fits everyday so i went back to the doctors and he added a drug called epilem yet again the fits increased again so i went back again as the fits increased i was being prescribed more and more drugs this went on for

10 years by 1989 i was having about 20 t0 40 seizures daily and i was taking about 15 anticonvulsants a day which were tegretol, epilem, clobazam vigabatrin and epanutin and all these were quite high in doseage and i took them all together every day by this time i was feeling very ill and also suicidal because i could see no way out of having these seizures and taking all this medication, at the end of 1990 i was taken to see a very good specailist in this field who admiited me into his hosptal which by now i had been to 5 different hospitals for tests whilst i was in there i felt really unwell and was sent for yet another eeg,

i had tests then one afternoon he came to see me and said i have already

spoke to your parents and what i am going to tell you will be a shock at this time i thought they had found brain tumours or something serious like that but he words i will never forget to this day he told me i hadnt got

epilepsy and the drugs i had taken had induced all the seizure i had suffered

he also told me i had been wrongly diagnosed. it was i shock i was very upset and also very angry i had taken these drugs in good faith and i had

suffered for the last 10years with having alot of seizures daily and not been able to have a life i lost all my independance and had to be looked after like a child having someone with me for 24 hours a day my husband even had to give up work and i was told not to have a family which as i was labelled an uncontrollable epileptic as well as having all the fits i was having i had started to feel really unwell a few month before i was told i hadnt got epilepsy but i thought it was because i was exhausted from having all the seizures i was having but even after the drugs were stopped and all fits had stopped i was still feeling very poorly and i notice i was bruising for no reason so i went to the doctors and was told women bruise i deceided to go docs again as i was definitely getting worse and the bruises were increasing this time he sent me for blood tests and sle was diagnosed i was started on prednisolone a but i didnt feel much better close friends and family asked me if i was going to do anything about being misdiagnosed in the end i decided to go and seek legal adivice a start a claim compensation was never the issue i wanted justice especailly with being told not to have a family as i would of loved to of had children anyway as i mentioned i was on prednisolone but still didnt feel well so i was put on azathioprine after being on this for a short amount of time i had a couple of fits i couldnt beleive it i was admitted in to hospital again and it was found that i had irreversible damage caused by all the fits i had had for 10 years and im suseptible to fits if a side effect of a drug happens to be can cause fits which some can so the azathiprine was stopped and i cant take it i have to becareful with other medication too i preceded with my med neg case which went on for 9 years but i didnt succeed the expert i went to see regarding all this backed down and went againist me so i didnt get any compensation what so ever during the 9 years of fighting alot of my medical records went missing from a few of the hospitals i attended the case never even got to caught i was told in 1998 i didnt have a case which is quite along time ago now i have had lupus now for nearly 20 years something i will never know is what it lupus initially or was it caused by the anticonvulsants i was given or the many antibiotics i was given just to passify me wen i felt unwell and exhausted wen i was having the fits all i know is before i was misdiagnosed i was a very healthy active young woman who really enjoyed life and i was very happy with a good job i use to swim competitively and was sport mad what really angers me in all this is when i had the initial eeg it states in my medical records that although there is a slight disturbance it is not diagnostic of epilepsy and yet it was still diagnosed by the specialist i was under and know one has been reremanded for it recently i was diagnosed with fibrolmyalgia and srojens disease which are very similar to lupus i take choroquin phosphate which i dont have a problem with when im very poorly i have to be given cyclophosamide i will never give in to these conditions im happy in my personal life i may even write a book and use my medical records as a reference as i do have a copy of the ones that didnt go missing maybe one day i will get justice writing a book will make people aware of what happened then it wont happen again but i do beleive it has come to light recently that people have been misdiagnosed of epilepsy i always knew the med neg case wasnt going to be easy close freinds and family want me to try pursue a claim but it is too late and to be honest i dont want the stress especially with not having very good health to me the most upsetting aspect in all this they told me not to have a family and this is very difficult to come to terms with my parents have never had grandchildren either which upsets me

living with lupus isnt easy but i will never stop smiling !!!

3 Replies

Goodness, you have been through the mill and back. It's good to hear you are still smiling tho. :-)


Hi Milly,

I was misdiagnosed as well, but seems that you have really been through it and I thought that I had had it bad enough !!

Also, like you, I keep smiling and think that you have to despite all the pain, the worry, the stiffness and the wondering if it is all a bad dream.

I think that your perseverance is marvellous and wish you good luck for the future.


hi thank you for your reply i was sorry to hear you have been misdiagnosed to if you dont mind could you tell me what happened i understand if dont want to tell me thought if its private did you make a claim , taking of the nhs is very difficult as they bury there mistatkes and pull rank anyway thanks again for message take care


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