Hi, I have lurked for a while trying to pluck up courage to post...
My name is Laura and I am 53. I was very ill 10 months ago, taken into hospital suffering from Confusion. I couldn't swallow so didn't eat anything or drink anything for a good week. I didn't recognise who my hubby and Sister were, was acting in a very strange way... Lost all bladder control, had jerking of my right hand. Couldn't really communicate with anyone.
A TIA was rulled out quite quickly but there was an abnormality showing up on the scans, I had a Lumbar puncture, CT & MRIs Loads of blood tests and they diagnosed me with Viral Encephalitis. After 5 days I was transferred from my local hospital in Margate to to the Kent and Canterbury in the neurological ward. I was treated with Acyclovir and slowly improvements were made. Although I was very weak but still wasn't drinking enough and after week was allowed thickened liquid & pureed foods only.
I had electrodes placed on my head and wrists and ankles. I began to talk a bit but in whispered tones only. Convinced people were talking about me. General confusion, agitation and forgetfulness!
Finally after 15 days in hospital I was allowed home but just a few hours before I was due to leave for home one of the neurologists came to see me saying I had APS. Not knowing what it was he explained it as having a blood clot on the brain! I was given warfarin and allowed home.
At my follow up out patients appt I asked my Consultant about this APS and the blood clot and he explained but I couldn't fully understand but he did say that I don't have 'a' blood clot on the brain. I have lots and lots of blood clots on the brain! Now to my way of thinking that sounds words! He said I would be monitored very closely over the coming months.
Then he said he wanted me to see another Consultant neurologist in Canterbury who was more of a specialist in APS. So a few months later when that appt came round he said he was concerned about keeping me on Warfarin for much longer but said that he would see me again in February/March with a view to stopping it.He also said I have an Encephalopathy! Haven't a clue what that is to this day, is it along side Encephalitis and or APS???
Now comes my worries. What if the blood clots haven't gone by then, how will they be able to know if they haven't come back?? And other worries plague me. Should I ask to be kept on Warfarin just in case??
My Consultant has already told my hubby that I shouldn't be left alone for long periods of time as he is concerned the Encephalitis could return. Oh and he said I have Autoimmune Encephalitis not Viral at my last appt! I am already Disabled, as I have ME & Fibromyalgia, COPD (Moderate) constant excruiating headaches since this all started, 24/7, chronic lower back pain and chronic pain in my hips, arthritis in both knees, have absolutely no upper body strength so cannot propel myself in my wheelchair, I cannot hold my arms up for long so can't wash and dry my hair, I cannot stand for more than 5 minutes before my legs wobble and I collapse, I have frequent falls. I am now always in a wheelchair when ever I go anywhere as my mobility has gotten even worse, my memory has really gotten so bad now that I can't even remember my last conversation, I cannot get the right words out, am so very tired but can't sleep properly, I feel like I am a burdon and just want to get better. I was told to expect a long recovery time but I am nowhere near what I was this time last year and even that wasn't brilliant but much better than I am now! They told me in hospital and my hubby confirmed it that I was very lucky to come round because at one point they couldn't even tell my hubby if I would ever get any quality of life!
My hubby is my full time carer and is a good man, he really has been taking great care of me and only leaves me when I am resting in the afternoons to go shopping knowing that I won't wake for a couple of hours. But it is only us as we live an good hour away from my Sister and two hours from his family! We don't have any friends so don't get to socialise so he doesn't really ever get a break from caring for me!
Sorry... Didn't realise I had written so much...