Encephalitis Cases

Iolanda What I'm writing is as accurate as I could get mum to tell me, since I actually don't remember any of it myself. I owe mum a debt of gratitude for all the questions that she put up with! One of the reasons I am telling this story is to see if there is anybody who can help me. Years after diagnosis of Limbic Encephalitis, I am still haunted by severe tingling which has worsened with time and is unrelenting in it's intensity and determination. I would welcome any suggestions as to what I could do to determine the cause of it and/or to treat it. Mum said something that summarizes the last few years of my life quite succinctly - that I was "never one to do things by halves." I was diagnosed with both Hodgkin's Lymphoma (Lymphatic cancer) and Paraneoplastic Limbic Encephalitis in Nov. 1997 at the age of 31. It all happened at a happy time in my life. I had got a promotion at work where I was in charge of preparing the annual accounts of a multi-million dollar enterprise. I had a postgraduate Masters degree in Professional Accounting and everything was going smoothly. And then, the walls started tumbling down, my walls took 9 months to crumble. To illustrate medically how difficult encephalitis can be to diagnose - it was 9 months from when my first symptoms started to when I was finally diagnosed. My problems started around March 1997, when I developed blurred vision and an short temper. I also became very moody, crying for the smallest of reasons. From May my health commenced a downward spiral and hit bottom in November. I was becoming exceedingly tired all the time for no reason. My vision worsened and I developed a fear of bad things happening. My emotions dried up and May was the last month I menstruated during my illness. I grew increasingly depressed and had anxiety/panic attacks about ordinary things like the news. I developed a increasing sensitivity to light and visual heights and by August all I could do was spend my day staring straight ahead. I also began to have general dizziness, chest pains. During my August MRI I was so stressed out by the equipment that I had to take a Valium. The results were again non-conclusive.! From September onwards I spent a increasing amount of time sleeping during the day in a chair. I also lost my taste buds and experiencing increased hunger. My anxieties continued to increase and my temperature rose. I got dizzy if I moved my head too quickly. At this stage my eye problems were also worsening - my eyes would flicker for as long as 6 hours at a time. I was also becoming increasingly confused, but I hadn't yet lost my memory. Between May and October I visited every specialist I could to resolve my problems: on top of my GP and oncologist I saw a neurologist, tropical disease specialist / microbiologist, 2 optometrists, an ophthalmologist, an eye movement specialist, a physiotherapist, 2 psychologists, and a psychiatrist. During September I was seeing a medical person almost every weekday for the whole month! I also attended meditation and Reiki classes thinking that my problems were all related to stress. Because the nodes on my neck had recently enlarged further, my oncologist suggested that I have some more removed for biopsy. So in October I had 3 enlarged lymph nodes removed, of which only 1 had slight traces of Hodgkin's Lymphoma, a cancer that is known to show an excellent response to treatment. We were actually relieved that something was now showing up and we could move forward and tackle it. My oncologist "reassured" me that Hodgkin's cancer has a very high cure rate. In October I went to see a GP because I had not menstruated since May 1997. He sent me for a blood test, which showed that I had a low hormone level equivalent to that of a menopausal woman. I took these results to my post operative consultation with the oncologist, and, bearing in mind my alleged nystagmus and Hodgkin's, he had me admitted to Hospital as an emergency patient for further tests on my head. I was there for 18 days, and it took 5 days to diagnose the Paraneoplastic Limbic Encephalitis. Since the cause could not be determined I had treatment as though either a virus or the Hodgkin's caused it. During my hospital stay my memory was deteriorating more each day. I had an aggressive treatment of 5 months of chemotherapy, and one month of radiology as well as an anti-viral. The Encephalitis began improving soon after treatment began. I was declared in remission from the Hodgkin's in August 1998. I've come a long way since leaving hospital in November 1997. I have read many memory books and attended memory courses. I have taken up relaxation and joined local cancer support groups. I also returned back to work in October 1997 but for only 12 hours a week. I continued to work 12 hours a week until July 1999, when I lost the position because I was unable to work a full working week. During this time my pain levels increased. . In August 1999 my regular CT showed enlarged nodes near my breast bone. The 3 nodes which were biopsied came back completely benign, showing hyperplasic of the thymus gland. I secretly hoped that the cause of the inflammation of the nodes was also the cause of the increase in my pain levels, but it wasn't to be. I became a patient at an internationally renown pain clinic in August 1999. We will now explore other avenues in an effort to get the pain levels under control. I still have all the problems from limbic encephalitis mentioned below. In summary: Short-term memory has improved, but still causes problems. I'm probably at 50% of my pre-Encephalitis energy levels. My body and particularly my legs & feet tingle all the time. My hormones are currently uneven. I have not menstruated yet. The frequent need to urinate has only mildly subsided. I am still constantly hungry, my weight increased. I am still quite thirsty. At its peak, I drank almost 10lt a day. My emotions returned with a "bang" in March 1998. I'd like to thank my parents for their support during this period, I couldn't have done it without them. Thanks very much, Iolanda Australia No Email available. Posted: December 2002