Does brain damage get worse?

After you have your bout with encephalitis, does brain continue to get damaged or worsen? Has anyone experienced reemergence of brain lesions after the originals have decreased?

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After your bout with E you get a little better every day, every week, every month, every year. It is very rare for someone to have another bout with E and after the brain swelling goes down, your brain will open new pathways. My neurologist keeps telling me to read more, take a class, etc. to keep the brain active.

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We are only two months post, but my son's MRI's continue to look worse and worse even though his general health and appearance keeps getting better and better. It's very confusing. Everyone here and the doctors have also told me that's how it is, and that it can take years to have better MRI results. We have another MRI coming up in a few weeks and I have to steel myself for it to continue to look bad even though I am so glad that he is not having as much physical and mental issues as he could be experiencing and continues to improve despite the imaging presentation.

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Hi Brigitte.

You will find that the brain damage improves quite noticeably in the first 2 years or so, then the improvements slow down. My wife is still showing signs of improvement after 6 years. Time and TLC are the best medications.

Good luck.

Bob

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Hi Brigitte, may I ask what kind of E did or does your son have?

Susie

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Hello Brigitte,
You ask an interesting question here.
Not having any sort of medical background, I can't give you a concrete answer, but I think I can offer you some insight.
As you probably have learned by now, there are lots and lots and lots of different "things" that can cause the brain to want to battle them off, and go to do to the "swelling-up" thing.
For most of us here.... ....once we win the war against those invaders, its over. The damage done during the battle is the damage we are left to deal with.
b-b-b-but, there are people who have problems - post encephalitis - where the immune system continues the battle, only its battling itself, and this can and does continue (I think) to cause damage.
Then, on a different level, there is the problem of stressing a damaged brain.
Often, this makes functionality worse, and therefore, people think they are experiencing a relapse, or, as your question may imply, having more damage.

So this question gets a Yes and a No for an answer.
Now, I have had a series of poor functioning days here, and it 4:51 in the morning and I have been in an extreem confused state since early yesterday morning - so, take this for what its worth, not very much,
-dannon

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My only 2 new symptoms are new lesions. The old lesions have reduced and now I have new ones appearing. The seizure Medicean I am taking has done a good job of controlling my seizures up until these past few months. I see Bert & Ernie before seizures. Yes the Sesame Street characters. LOL. Go figur. I do work in preschool. I haven't had these visual symptoms in quite sometime and they have now returned as well as some sensory seizures.
The lesions are what scare me. I go in for an MRI sept. 2 and if they see growth I will have a biopsy. So far they have not determined What kind of E it is or was. Numerous tests have been done, even sent to the Mayo clinic. I am so frightened that the brain edema will return, with thr return of these new lesions, the last time it came so suddenly without much warning. This is what scares me the most.

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My daughter's mri's seem to be worst each time (approximately 3 month spacing between them), yet as her mom, I see physical improvements with her muscles and senses. She has definitely had a personality change in this two year period, but some of it is because she is dealing with E basically alone at 22 (she gets very impatient). Her E is right frontal lobe only, and that is where the mri's keep showing "bad" areas. Of course, each time she hears the mri's don't show improvement, she feels worse- we dread these appointments! So I agree with dannon, it's probably yes, and no. My daughter's E is said to be auto-immune.

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Irish99,
First and for most I love your name, my mom a proud Irish woman who passed away a few months ago, was so proud of her Irish heritage.
Now on to your post. I also have auto immune E. I was dx back last Nov. I do have other auto immune diseases also, but the dx of HE just took me
down. I understand how your daughter must feel. Being so young and your whole life ahead of you. But the good thing is with the autoimmune E is that it rarely is fatal if dx in time. So that was the one thing I hung on too. I felt lucky to have a great Neuro who dx me. Is she on any type of preds, or immune suppressants? Did she get the large doses of preds in the beginning? I also have a suggestion, I myself have started to see a physgoligist because I was feeling so depressed (lots of other things I am dealing with too) and I never, ever, believed it them, but it has helped me already and I have only gone twice so far.The one thing about being dx with a brain disorder, is that you feel not as smart as you use to, like a little inferior at least I do and I am 58 I can not imagine how one would feel like at the age of 22. But the doctor explained it to me as far as losing some of the congintive ability in such a way that made me feel so much better. Maybe someone could help her too. When you hear nothing looks better after the MRI I am sure she feels bad. Even if she feels better physically it has to affect her thinking when she hears this. I am so sorry others have to go through this E crap.
Susie

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hi,
i had WEE in 1974 (12) i am now 50 and in my experence it went well during the 1st several years then things slowly have been getting worse for me, body & mind.. i keep asking for info for a long time and i can't seem to ge any where? i need help in finding help. migrains, tremmors,slured speech and much more. i am trying to get help from SSD or SSI and do not know what will happen? if you have info on where i can call or go to get help please let me know. i hope things go well for you?
sincerly denise
aka brokenbrain

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Perfect,
My daughter was doing steriods and IVIg treatment but will now be trying Rituximab for 4 weeks (one dose each week). She is very intelligent but feels her strength in math has gone way downhill. Her vocab and verbal usage is very good. She is right-handed, and her E affects her right frontal lobe and left side muscles(foot drop, etc.). She also has Rhaynards - mostly in her feet being cold, but I remember a few times when her hand would get so hot ("on fire") that she had to grab cold ice or metal to calm it down. Rhaynards was discovered about three years ago; her Rasmussen's E only about 1.5 years ago, after a lot of blood tests, mri's, scans, spinal tap, angiogram, and brain biopsy.
She goes to a counselor as regularly as possible, though she is on her second one, and will have to find another one shortly as she has moved back from graduating college. She would like full time employment in her field, and to live on her own, but for now we wait out the plan for the new treatment. She knows she may not be able to handle full time work, or may even have to change careers, even before the college tuition loan bills start showing up in the mail. So far, her counselors seem to help her (according to her) but I bet they've never met anyone in quite the same situation(encephalitis that is still progressing).

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Hello Irish99,
I contracted E in 2005, I'm unable to read no matter how much I persevere you can tell me something and it is gone within seconds. I don't know that I am getting worse but I don't seem to be any better. I take anti depressants to help me with stress and anxiety. I believe what Dannon says is true, there really isn't an answer to your question. It's the glorious uncertainty we have all accepted
I wish you and your daughter well,
take care,
Lynnie xoxo

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brokenbrain, are you trying to get income from social security or medical help? if you paid into social security recently you might be eligible for a ss disability check. if you haven't paid into ss but you are found disabled you might be eligible for ssi. you would have to apply with social security to find out what you might be eligible for. if you are looking for medical help from social security i believe you have to be disabled for 2 years before you might get eligible for medicare. but if are found disabled and are eligible for ssi you can apply for a medicaid health card with your county welfare office. anyone getting ssi is eligible for a health card. hope this helps. you might also apply for food stamps if you are single and eligible for the ssi.

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Bridget,
I guess, I have to say and I am not an expert in any way or means, but that with my own case of Hashimotos Encephalitis, mine comes and goes. I have never felt like myself since before being dx. Somethings are better. I feel I can talk again, finish my sentences, unless I get over tired or very stressed, then the talking gets bad again, my balance is better, but again is not like it use to, I still tip for no reason, or find myself off balance but not like I was. But trying to accept the new me. This is a hard thing to do. I can feel a flare coming on when my right foot starts to drag. My balance starts getting worst, my memory, speech, concentration. I guess like everyone has said it is hard to say because with autoimmune e every case is so different. Just want to say good luck we are here to help.

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What I always get from this website is that we truly are not alone in our journey with E. I had E when I was 7 yrs. old, I am 58 now. My symptoms have been a problem throughout my life. As I have gotten older some seem worse unfortunately. My balance, my migraines, and many sleep disorders as well as memory loss. I have been going to a TB I support group which has been excellent. The higher functioning members mentor the lower functioning members. It helps to feel like you can give back in some way. I don't get support from my doctors it seems like they do not have a clue about E. I wish you speedy recovery.

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I find I have times where I seem to be worse, but I can only tell that because some things have gotten better. I still can barely read & not over a paragraph, but I can do a little math. By a little I'm talking minor adding or subtracting. I was never really good at math, but I could add & divide. I used to read a novel a month if not less than that.

Recently has been a walk into things like the walls were moved, but I'm not sure that's me getting worse or if something is just setting my balance off.

Michelle

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i truly know how you feel, i to have had much better times since i got E. latly ,like you everything is not working. i wish i could find help but all they do is give me drugs. there has got to be a better way.i wish some one would show me the way to getting real help that would benifut other E servivors.

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