my story starts in 1978 i was 18 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 i 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 increaed i was being prescribed more and drugs this went on for
12 years by 1989 i was having about 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 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 as a inpatient
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 had
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 12 years 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, when i came home after having all drugs stopped i decided when i got over the intial shock to go and see a solicitor about a claim which i did within the time of this claim alot of my medical records went missing from the hospitals i had attended i fought this case for nine years but i didnt get anywhere i didnt even get a penny compensation was never the issue i wanted justice within this 9 years of fighting this claim i was diagnosed
with having lupus after starting with bruises and feeling very unwell and tired about 6 months after the drugs were stopped there was a chance the lupus was caused the drugs but this i will never know or was it lupsu intillially when i was diagnosed with epilepsy. im back driving now as i didnt
drive for all the years i was having seizures i have had lupus now for 15 years i have some very bad times but i try to keep smiling lupus is a very
complicated condition im sure i never had this when i was younger as i was sport mad and swam for my local town now i can hardly walk and im very tired most of the time i can feel really poorly with it, i have tried a couple of voluntary jobs but i have had to [pack them in because they made my health worse i am unable to work. even now i get very upset and angry about being wrongly diagnosed and the fact that it went on all those years without any one looking at what really was going on. im now 47 try to get on the best i can i have most of my medical records upstairs in a box sometime i think should i write a book and use them to help me but where do you start i have used my records to write this story becasuse i dont want anyone else endure the pain and suffering i did for 12 years i think sometimes i got through this to stop it happening to some one else.
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