Me And My 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

BloodVamp BloodVamp
31-35, F
2 Responses Feb 26, 2010

I hear you sweetie, I'm going through tough time of it myself with it. It sounds very similar to my own experience of what is as yet only a possible diagnosis of whole body action cortical myoclonus. I've started on phenol-barbitone or however you spell it and together with nausea and extreme fatigue, I'm having small bouts of normalcy. You need to get to a different neuro, I think, and get that damned diagnosis. I can even dance in small bouts now. Even though the rest of the time I'm somewhat useless. This is the beginning of me talking about it. Big step xxx

Sound like post-anoxic myoclonus aka Lance Adams Syndrome! It happens when people are resuscitated after breathing stops.