Limbic Encephalitis

• By SickOfBeingSick
• Posted October 23, 2009 at 2:29 am
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Hi Wendy and others,

I have been told by neurologists that I have damage to the limbic system. I have damage to other parts of the brain, also. I would be very interested to discuss limbic system damage with people. It actually is one of the main reasons I was interested in contacting people on this site.

I will e-mail this person, but I would also love to have a thread or open discussion here about limbic system effects. I'm more than a little sensitive and defensive about this stuff, so it's not easy to discuss, but I have felt very alone and isolated in dealing with this so I will take the plunge and discuss it!

I had the weirdest emotional and memory stuff happen with this last case of meningitis. For days, completely random memories from my childhood, things that I had never thought of again after they happened, would come up as vivid memories. My emotions seemed to take on a life of their own. Things have toned down, but emotionally I changed dramatically, practically overnight.

I was also faced with problems figuring out what was appropriate and what wasn't. I would become very dramatic and not even realize I was being overly dramatic. I would say things having no clue of what the effect of my words would be on the other person. So very, very different than the way I was before, very self-controlled and always super-aware of, and "taking care of? responsive to?" (not sure how to put that into words) the feeling and reactions of others around me.

I became very assertive, overnight, and wouldn't put up with any of the stuff I used to be so patient with. That part was good, I needed to be more assertive, but I wasn't prepared for how people would react!

I cry at the drop of a hat. It gets very embarassing sometimes.

My balance is off. I sometimes walk with a cane, mostly not, though. It's not dizziness, just an inability to keep my body in an upright position. It sometimes hits me suddenly and I have actually fallen into or against other people in close situations, extremely embarrassing!

For the longest time I felt shell-shocked. I couldn't understand why people were reacting to me the way they were. I thought I was still the same person, acting the same way as before, until I started to examine the things I was saying and doing and realized they were dramatically different, and I didn't even realize it!

I would love to hear about others experiences in this area.

Cathy

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• By ebk
• Posted October 23, 2009 at 6:01 pm
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Dear Cathy: I don't know if it is age or the disease. I am encumbered by lack of balance, but refuse to use a cane or walker. My short term memory is impaired, but my long term memory has returned. It is good enough that I have been able to return to my job teaching at our local community college. Another impairment is that I don't always know where I am. My ability to read a map is not good. I was never that great at working technological devices like cell phones, computers, setting alarm clocks,etc. & now it is worse. Multi-tasking is another problem I have. I was was having hallucinations, but these have subsided. My encounters with people have been good. My Bridge game has deteriorated, but we play with long-time friends & husband. They tolerate my poor playing. I can only count Trump, but none of the other cards that have been played. Old friends feel that I have made a remarkable recovery.
My husband feels that I am much more sensitive to critcism & become argumentative. The more I argue , the 'wronger" I am. Oh Well, at least I am here. I would love to know what happened to you initially. I had a terrific headache. I rarely have headaches so my doctor said to go to emergency. I was getting ready to go when I collapsed and was in a coma for 10 days.
When I woke up, I was like an infant not being able to sit, walk or use the toilet. I even had to have speech and cognitive therapy. I must say that I had wonderful care & rehabilitation. My next goal is to drive alone.
My husband has been my chauffer. I really miss that freedom of driving. My husband has been wonderful about taking me where I need to go.

Cathy, please write again. Elaine

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• By SickOfBeingSick
• Posted October 23, 2009 at 8:06 pm
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Hi Elaine, and Welcome!

I can relate to a lot of what you said, for example, being argumentative, having trouble multi-tasking, getting lost, etc. I have written a lot here today (check out the thread on the limbic system) and I need to take a break, my head hurts.

The story of my acute illness is long, but I will post it after I get some rest. There are a lot of caring people on this list, so hopefully while I am resting, someone else will post.

Cathy

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• By SickOfBeingSick
• Posted October 24, 2009 at 5:40 pm
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Hi again Elaine,

Damage to the limbic system can cause problems with balance. I sometimes walk with a cane. When I go to the grocery store I use the motorized carts. Anything I can do to take the "load" off, leaves me with more energy and brain power to do other things I need to do in my life, and makes my life much better.

I also have lots of problems with short term memories and with making new memories. I have to write everything down immediately, and make sure I put the notes where I can find them!

I have returned to doing part-time computer programming projects, but I am thinking I might need to find something new to do. This job is just too hard for me right now. It takes me days or weeks to do programming tasks that were simple and quick for me before. The processing time and problem-solving time required by my brain has increased greatly.

I also get lost while driving much more frequently now and have a lot more trouble finding my way around.

I can forget about multi-tasking. Doesn't that mean breathing and walking at the same time?

I think a lot of people on this list have these same problems although they may have been diagnosed with "encephalitis" in general, not "limbic encephalitis". Limbic encephalitis just means the doctor thought the limbic part of the brain was the part most affected by your encephalitis. Even though the limbic system may have been the part of the brain most affected, most likely other parts of the brain were also affected to some degree.

I have also had hallucinations during high fevers, but not from my meningitis damage.

I'm glad you are able to socialize and enjoy being around friends with no problem. Socializing has been problematic for me. I have problems with extreme irritability and figuring out how my words or actions will impact someone although I have gotten a lot better at this. At first it was agonizing.

You asked what happened to me initially. It's a long story and I have a lot of trouble with rambling and not being concise, but I'll try to make it short. I have a genetic immune deficiency, kind of like genetic AIDS. I have had multiple infections that have caused brain or central nervous system damage, the worst being a case of meningitis that I had in 2008.

I began to get purpura (bleeding under the skin) all over my body. I joked with people about my "purple leopard spots". I was very concerned, but the doctors didn't seem concerned at all.

Then I started getting all the classic meningitis symptoms. I recognized them since I had had meningitis before. I was nauseous and had a fever. One day I walked into a restaurant on the way home from a doctor's appointment because I couldn't make it all the way home. I had to cover my eyes with my hands the whole time because I couldn't stand the light. My neck and head hurt. When I was in the ER, I would practically scream if they tried to put the back of the bed up. I seriously thought about shooting my head off, it hurt that badly. My blood pressure started going up, at one point even hitting 213. My vision was blurred. I began to have serious memory problems. If I put something on the stove to cook, I couldn't for the life of me remember it. Several times I had flames on the stove, one time 2-foot high flames! I began to have trouble walking. My legs just wouldn't keep up with me, and I had scraped knees that looked like a 6-year-old who fell off their bicycle. I also started having serious problems communicating. I couldn't carry on a conversation most of the time. I had several full-blown seizures, one that scared a friend half to death.

I went to the neurologist and he diagnosed me with auto-immune meningitis. I took the steroids he prescribed and they made me worse from lack of sleep and not being able to rest, not better, so I quit taking them.

I figured my meningitis must not be auto-immune, especially with my immune problems and since I had had a long-standing dental and facial infection that could have travelled to my brain. I went back to the neurologist and he completely blew me off and refused to reconsider his original diagnosis. I am absolutely amazed that they let me drive home from his office considering the state I was in. It was worse than someone driving drunk, and I didn't have the cognitive ability to realize I never should have gotten behind the wheel of a car.

A friend took me to the ER and they gave me a single IV antibiotic treatment that made me drastically better, but wasn't enough to make me well. Later, I don't know how much time later, I got several more days of IV antibiotics that cleared things up.

I am very disappointed in the treatment I received. My meningitis wasn't severe enough to put me in a coma or anything, and if I had received prompt IV antibiotics, I might have gotten away with very little or no permanent damage. I wish doctors wouldn't have the attitude that if you aren't in a coma with profound issues, or if you have been sick more than 24 hours, it can't be encephalitis or meningitis. Doctor's who work with AIDS patients are finding that this just isn't true.

Ok, sorry, that wasn't short. Brain won't work to edit it.

How long ago was your encephalitis? Hopefully you will continue to improve and maybe be able to drive again. It sounds as though you are making great strides forward.

Cathy

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• By sidewinder
• Posted November 6, 2009 at 11:39 am
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HI ELAINE. I WANTED TO WRITE TO U AND MY HUSBAND AT 43 YRS. WAS DIAGNOSED WITH THE LE THIS PAST MARCH AT JOHNS HOPKINS. IM GLAD TO SEE U ARE DOING GOOD AND WOULD LOVE TO SEND EMAILS BACK AND FORTH WITH YOU. DUMPIN1122@YAHOO,COM. THANKS .......

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