I Have Myoclonus
Hi,my name is Julie and i am 35 years old. I have suffered Myoclonus since December 2003 when i was 29. I am asthmatic and i took a bad attack and had to go to hospital. My brother called a taxi but when he seen i was getting worse he called an ambulance. He was told to get in whatever came first which was the taxi. On way to hospital i stopped breathing, then near hospital my heart stopped. Basically i went from Respitory arrest to cardiac arrest. I was in I.C.U for 3 days on a 2 of those being on a ventilator and sedated. When i was brought round i had memory loss and when i was put on a ward i was told what happened to me. I had no recollection of the attack but found my whole body constantly *******. I was told i had myoclonus and in Dec 2003 i was put on Phenytoin and Piracetam which helped. Two of those days when i first was on the ward i suffered two grand mal epilepsy seizures. Throughout 2003 to May 2004 i had a hard time trying to walk again but by changing the Phenytoin to Sodum Valproate and upping the dosage of Piracetam by June 2004 and July i could walk about on my own again and do about 90% of day to day things any normal person could do. I couldn't run anymore or carry heavy items but all else as great. In 2005 i met my partner/fiancee and i fell pregnant. My doctor told me to reduce the meds as fast as i could for baby's health which i managed to do but found what i expected...my condition began to get worse. I couldnt walk on my own or do dishes due to arms ******* and legs. It would start with one muscle then go to the others. All this would last anything from 5- 20 seconds and 4/10 times i would fall. I found i could no longer walk on things like grass, gravel, anything with stones, uneven paths unless i was holding on to my fiancee. I then had my daughter in Nov 2005 and then went back up on dosage of medication however it proved not to work anymore. I seen the Neurologist several times and he changed my Sodium Valproate to Clonazepam. Again i found it of no use and had to struggle every day to do things. We moved to Cumbria in 2007 and since seeing a neurologist here he has said my tests came back all clear of epilepsy and decided i come off not only the Clonazepam but the Piracetam and i would feel better. Well i was on Clonazepam 0.5mg 2 in morn and two at night..im now on half a tablet in morn and a quarter of a tablet at night. The Piracetam 1200mg i was on 4 in the morn and 4 at night..now on one in morn and a half at night but my condition again has proven to become so bad over the year of reduction that i can no longer walk without holding onto my fiancee, if something or someone walks in front or behind me i jerk and my legs go from under me and also travelling to the arms...i have noticed when i talk i sometimes cant get a word out even though i know what im going to say and all that comes out is aaaaa or baaaaa in a deep thrown voice tone which again i have no control over. The situation now is the half a tablet i take at night i had to up back to one tablet due to the fact i cant walk about my own house..get out the door, or even into the car anymore. All my doctor told me was to up the medication till i can walk and go down to the surgery to have a chat. Oh i forgot to say say since i fell preg i could ni lonnger get up stairs and is still the same to this day and i havent been able to get in and out of a bath since 2005. I used to be able to walk on my own, get on and off of buses , trains use a taxi but now i cant even do that. I struggle to get up a one inch step to my toilet. I have had grab rails put in the toilet area, but i am at a dead end trying to figure out what is wrng with me ...is it Myoclonus or is it something else and can i be treated to a point where u can at least walk a bit better than i do now. Any helpful suggestions or information would be very grately appreciated. Thank You.
Julie
