What are symptoms of autoimmune encephalitis?

[vision blue]

I have a vague knowledge of it and have seen various posts scattered, so was wondering if those who have been through it can say some more about how it presented in them. Also interested in whether there is any connection to that and, for lake of a better term, (new onset) "neuropsychiatric" (I think) symptoms. I've also heard people on this forum discuss derealization, and i have no idea what that is.

Background and I've mentioned some of this before is after years of CFS and AI illness, the symptomatolgy changed a few years ago along with the onset of a frequently recurrent presumed hsv1 (herpes simplex 1) in atypical places. Hard to know if the herpes virus was causal as it also followed a mystery febrile respiratory illness I got from a doctor that gave me a week of fever, 6 weeks of coughing, and followed by severe vertigo.

But now fast forward from that and new symptoms have occurred in I'd say - not sure - 6 weeks? 2 months? Each herpes viral recurrence causes flares in the dysautonomia with especially excess sympathetic nervous system activity. and now its more like i have the recurrences at a low level all the time.

but... besides the worsening nerve pains in head and chest and electric sensations. with each recurrence and dizziness (all of which i've had since the start of the virus), I can no longer be comfortable in my own skin. not sure how to describe - agitated maybe? cannot relax for a second. feels awful.!In addition, emotions are off and not like me at all- moments of rage (I'll wake up in a rage), moments where something on TV seems INTENSELY funny - like emotional reactions all exaggerated. Three's also brain fog - something I did not have for years with CFS - it's much harder to write now and when i compare stuff i've written before to now, there is no comparison in quality and ease and elegance of expression. I think this is above and beyond the symptoms i get with sleep loss (which i also have - not sleepy). I do not feel like myself personality wise. I do NOT though get any obsessive thoughts /worries i've heard people talk about (not yet anyway) - so I don't have any troublesome thoughts or anything like that. I've tried many times to figure out why then this feels so uncomfortable (besides the upregulated and bizarre emotions which isn't uncomfortable per se, just not like me), but i cannot. I don't do well with meds, so there isn't anything i think i can take that may help (though i'd rather know first whats going on than to throw symptoms bandaids at it)

I've had a few moments where it's "lifted" - all of a sudden - like when i've had neck flareup injuries - then it just comes gradually back over a few days.

so curious to hear from others.. in terms of tests, i was thinking i need another one of the neural panels from mayo- it's been maybe 5 years since i had one (negative except positive ANA , not ANNA, was noted- and the panel i've heard people talk about here for neuropsychatric issues whose name i don't' remember.
Should i be getting nmda antibody tested? I'm not psychotiic - yet- but... (I know about the lab in germany and had discusssed with my neuro a few years back that i might get them, but for a variety of reason i dn't think i will be, so was thinking in terms of others. before this latest new symptoms, certainly did have reason for suspecting something up with andrenergic receptors).

also curious if there was a way anyone casually asked for the neuropsych panel whose name i don't remember this may seem unwarranted to others but there is not even a hint of anything in the psych category in my charts- i just haven't had any of those symptoms before. I am super reluctant to bring it up. its going to get plastered on my chart like a big red flag and i may not be able to put the genie back into the bottle if i mention it.

I also wonder if the herpes virus has spread from peripheral nervous system now to central nervous system and that's why now it's affecting cognition and emotions . but i don't think its herpes encephaliti8s, since it think i'd be dead from that by now if it was. otoh, autoimmune encephalitis is a possibility- that's why i was thinking along that direction.

so it's all alarming, not to mention uncomfortable

one more thing about antibodies, i'd like to test for like of anything else i know what to test, but i've never been a huge antibody producer. Not exactly sure why i think that, but ana titers for example have always been modest despite severe illness and IgG has never been elevated, plus i run lower than normal on other protein things like my beta 2 microglobulin is below normal (which of course is ignored) and CK below normal (despite muscle weakness, though i've read low CK happens in CFS and is a bad sign when it does). So even if i have the perfect list of antibody tests- i may be a seronegative version of this- whatever This turns out to be.

all adrenaline? but was never affecting cognition and emotions before. and the adrenaline is going to burn out everything...when i sleep (and cna't sleep much), as i mentioned, don't feel sleepy. and if something wakes me up (i'm super noise sensitive), i'm just wide awake; i never feel groggy or anything. can't relax even if sleep.

i can't even meditate anymore. its impossible to attend to anything- its not that mind wanders its that too "agitated" to concentrate on anything. so i can't even do the "body scan" excercise, something i used to do and could count on for being relaxing.

i of course have other symptoms, but mentioning these\

anyway, ring a bell with anyone else?

 

[Judee]

I kinda wondered this as well. @godlovesatrier posted about a test panel available in the UK for this but I cannot seem to find something similar in the states. I also had the ANA test and several others surrounding Lupus and Sjogrens as well as one long ago for ALS. They always come back negative though.

Here was that earlier post I mentioned in case you are in the UK:https://forums.phoenixrising.me/threads/autoimmune-panel-uk-private.84275/#post-2345201

If you are, and can afford it, it might be something to look into.

 

[PisForPerseverance]

Sudden emotional and cognitive changes are something that could indicate an autoimmune process and is definitely a common thing that happens with autoimmune encephalitis. You're right to be thinking this way as an explanation to investigate and you're right to be concerned, and I'm sorry. It's so hard to be living this way. There's not one set of symptoms so be wary if you hear that there is. The discovery of antibodies that can cause it is ongoing, so if you hear these are the few that cause it, that's also not true.

The fact that it kept flaring whenever you had a herpes issue and then getting better but now accelerating and more regular, also fits with autoimmunity. It wouldn't be unlikely that you have several autoimmune processes going on. So thinking in terms of one antibody could leave you without others that you may have identified if your doctors ordered you more tests and didn't stop at one positive. If your doctors won't order you what you want, if you want me to share the studies I've been collecting on some of these antibodies that you could show your doctors I can. They have to keep up with new research for every single antibody being studied in many different neurological diseases in order to know about all of it and the associations, so it's likely you'll have some new research they don't know about if you show them.

I don't think that you should discount possible worsening viral encephalitis from herpes or anything else. Autoimmune encephalitis is what I've been learning about mostly so I don't know that much about infectious encephalitis when there's not identified autoimmunity caused by it, but I know that they can occur together and some infectious encephalitis manifestations, like some autoimmune encephalitis manifestations, might be mild symptoms or gradual that may or may not get worse over time, rather than the coma and death being for sure or happening right away. I don't know which infections are thought to usually cause the really bad viral encephalitis and quickly. What some of the studies I'm reading are saying about infectious and autoimmune encephalitis is that these are emerging areas of discovery and that we should take every new insight as an incomplete picture.

I just ran Autoimmune neurology and Sensory motor neuropathy panels from quest and got some positives. Waiting on mayo Encephalopathy, autoimmune evaluation and Cunningham. I think the one you're thinking if is cunningham. Associated with pandas, but pediatric acute neuropsychiatric syndrome (pans) as well as same for adults can be from many antibodies and that panel only has five. Pandas is a kind of pans. Pandas is from strep whereas pans is a sudden onset from any cause but infectious and post infectious autoimmune are the ones most looked at and identified in pans.

I recommend those quest panels but know that they are 15,000 if what was on the paper at the lab was correct. My insurance is supposed to pay for all but 100 of it. Unless I get a surprise bill for more but I'm hoping not. I'm sure mayo autoimmune encephalitis is also expensive because I think it does the same kind of culturing or whatever they do with reflexes. I don't know what they do. Mayo autoimmune encephalitis I think has some overlap with the autoimmune neurological but they aren't entirely the same.

For your emotional and cognitive changes, dysautonomia changes, nerve pain changes, I recommend the four of those and mayo dysautonomia and the german one if you feel like it, you said you don't want to right now. And a syn-one test. It tests for a few different things, alpha synuclein, fiber density, and something else, in your cutaneous nerve fibers. Needless to say I got some very important health information from my positives. Good luck and please keep advocating for yourself. Literally all of those tests (except for the biopsy) that I have life changing information from, I asked for myself.

I am super reluctant to bring it up. its going to get plastered on my chart like a big red flag and i may not be able to put the genie back into the bottle if i mention it.

This is a good point. And just so sad and maddening that we have to think about and deal with being mistreated and barred access from care for some of our symptoms. Anyone's symptoms I mean. Anyone who has difficult emotional and certain cognitive symptoms being relegated to the stigma and "there's no known biological cause for any of this so were not going to look, even in modern times". And the dismissing and invalidating of every health problem due to anxiety or mood symptoms on the chart. Ugh. Yeah. I'm disgusted by it if you can't tell.

So what neurologist could you use that you can trust with your symptoms? A new neurologist maybe? One specializing in autoimmune encephalitis or in "adult pans"? I feel like.... suss it out. You could focus on the worsening dysautonomia and nerve pain first and then be like I'm also getting unexplained and completely sudden rage or finding things really really funny and totally bizarre emotions. Those things might get medical attention rather than the increased not being able to relax. Focusing on how sudden they are and bizarre would be to your benefit I think.

I mean one good strategy is bringing excerpts from research and case studies of autoimmune encephalitis. Ones that can cause emotional and cognitive changes as well as autonomic dysfunction and neuropathy are to your benefit to find and show them. The two antibodies I've been learning about the most because of what I learned I have so far, can maybe both cause all of those things I can go back and double check for you.

 

[PisForPerseverance]

Csf too. It's the needed counterpart to blood tests that may not reveal what's in your fluid. Really important. I'm really upset I have to get this because it scares me. But it must be done

 

[godlovesatrier]

Learner1 posted a link to a pdf I think listing all the collated auto immune panel tests she had found that people used. Half of which are based in America and one of which is accessible at an English clinic.

If I can find it I'll post it.

@Learner1 just tagging learner in case they happen to have it handy.

 

[PisForPerseverance]

I don't know when that list was made but vgkc and vgcc are not on the dysautonomia panel on mayos website. That's the only discrepancy I noticed so far but there might be others so we need to update that list. I think you said @Learner1 it was compiled by someone else. I can do that and add some more neurological antibodies.

 

[godlovesatrier]

Hmm I can't find the compiled list folks sorry, but this is the Cyrex Array 5 that appeared in the list Learner posted, I know she's not feeling too well currently so she might not be around right now:

https://embracingnutrition.co.uk/shop/tests/multiple-autoimmune-screen-cyrex-array-5/

This is the link to the only clinic I could find in the UK who had it. As you can see when you tag on consultancy fees you could be looking at £1000 and that's if they don't try and get more tests out of you. Which they normally do.

Yes if you have a full list go for it, I am not sure where the other one is :/

 

[godlovesatrier]

@Hoosierfans @lenora @crypt0cu1t - do you know if the above Cyrex Array 5 is a decent panel for auto immunity? I can't afford it but would be nice to know for future ref

 

[Marylib]

Have you made contact with these people? They may have some guidance. They're in the UK and I don't know where you are, but if they've been doing this awhile, they may have contacts closer to where you live. I just put emotional lability + encephalatis into a google search:

https://www.encephalitis.info/emotional-and-behavioural-problems

 

[PisForPerseverance]

do you know if the above Cyrex Array 5 is a decent panel for auto immunity? I can't afford it but would be nice to know for future ref

No these can be found offered by laboratories that may get covered by insurance in the us, so it's not a good panel unless there aren't covered options in someone's situation and in that case, I'm not sure I'd go for cyrex. It depends on how well validated they are compared to well known and heavily validated laboratory companies or smaller one's done inside of universities, and it depends on cost.

Companies that offer tests that don't usually get covered by insurance are less likely to have well validated methods and standards, in my experience/impression. Like I was looking at how well validated the neural zoomer test from vibrant america was today, because I took it in the past and I read from doctors that they don't know the validity, and I could not find Anything about their methods, any doctor overseeing the lab, or how they validated the accuracy of their tests. The only thing was a chiropractor giving a video on it and he developed the company along with whoever else and I read a podcast transcript of how he treats people with some of the neurological autoimmunities and holy sh*t he did not know what he was talking about and was totally irresponsible by not referring them to neurologists and he can't treat legally anyway. Any MDs or highly skilled researchers who developed or oversee the lab? I don't know. Yet Naturopathic Doctors and some MDs test their patients with it maybe without confirming what the reps are telling them. It's stuff like this.

I did this autoimmune test from cyrex a few years ago before I knew I could get those antibodies covered from insurance. No word from the chiropractor (yeah I don't take medical advice from them anymore) that oh just take it with an insurance covered lab.

I'll note that on the list. I'll add panels from typically insurance covered labs but I'll leave that one at the bottom with a note. No reason anyone should be paying out of pocket if they don't have to. I know for the uk you don't have the companies we have here. But I heard mayo you can send it to? Maybe you could find comprehensive panels in the uk for different issue areas?

Talking about the actual antibodies on the test, it's broad but still very small compared to all the antibodies you can test for so if a person wants it for a particular issue or a couple issues, they'd be better served by taking more specific and comprehensive panels. I'm guessing they tried to take the more common antibodies from different areas but looking at it I just don't know if that's true and I'd question that decision making. Also maybe outdated. It's definitely not for looking for autoimmune encephalitis. Hope this helps godlovesatrier

 

[Marylib]

Here's their page specifically about autoimmune encephalitis
https://www.encephalitis.info/Pages/Category/autoimmune-encephalitis

 

[PisForPerseverance]

AEAlliance Find a Doctor International warning information on the website is not comprehensive for antibodies, up to date with research, consistent with the varied symptom presentations and development, or consistent with how they are diagnosed. But this is an international doctor list.

 

[Learner1]

I don't know when that list was made but vgkc and vgcc are not on the dysautonomia panel on mayos website. That's the only discrepancy I noticed so far but there might be others so we need to update that list. I think you said @Learner1 it was compiled by someone else. I can do that and add some more neurological antibodies.

If you PM me a list of what you think should be added, I'd be happy to update it and repost.

 

[lenora]

HI @Marylib......thanks for the link about autoimmune encephalitis.

The ones described about cognitive function were the main ones I experienced, although there was one day when I went a bit insane and had what I refer to as "verbal diarrhea" which wasn't very nice for the staff and other patients to put up with. I became rather nasty with my comments (and I'm not like that at all) but I have to say it was also the fault of one of the doctor's who had taken me off my xanax completely, thus I was in withdrawal and a host of new meds (some just as addictive) were started.

My regular neurologist has severe problems with the health of a loved one, so he couldn't be reached. Apart from that one day and night (and the headache from hell), I was fine once I was started on my xanax again.

My biggest problem has been in the cognitive area and I've had to work very hard on that. I'm making some good progress and can only hope that I don't have another attack. This is still a fairly new diagnosis so new understandings of the illness are being come up with all of the time. I had the Mayo Panel twice, and I definitely had it, and also developed epilepsy at some point during this time. It was quite an experience, and something new for me.

It's amazing how many types of encephalitis there are, don't you think?

@Learner1 & @PisForPerseverance, how nice to see you helping each other out (and others). @Learner1, I understand that you've been feeling especially ill and do hope that you'll soon feel better. Yours, Lenora.

 

[Learner1]

@Learner1 & @PisForPerseverance, how nice to see you helping each other out (and others). @Learner1, I understand that you've been feeling especially ill and do hope that you'll soon feel better

I'm ok. Just trying to figure out how to shut down HHV6 which reactivated after oral surgery and 2 COVID vaccines. But the symptoms aren't bad. Only fatigue.

 

[lenora]

Hello @Judee.....There is a book titled 'Brain on Fire' that is a true story written by the author, a very young woman who went through this ordeal. Her problems were much worse than mine. Perhaps you could try buying it secondhand as I think you may like the story. It isn't long, and a movie followed with the same name. Personally, I would read the book.

Her experience was quite different than mine and went on for a much longer time span. Even though her life is more or less back to normal, it seems that she is still struggling today.

To answer your question: In my case, I started having trouble seeing out of my l. eye and this went on for a period of probably weeks or more. I kept thinking it was some new med I was on....as a matter of fact, even after seeing an opthalmologist a few weeks ago, being given a clean bill of health, I'm still suffering from the same problem...an overall blurriness in that eye. Anyway, it scared me b/c reading is my passion in life and always has been.

One day it affected my r. eye and I was left totally unable to read....this was much worse than it had been beforehand.

I had been walking around the house for exercise (too hot to do it outdoors) and suddenly my l. leg wouldn't work, it just collapsed. Rod then noticed that I wasn't responding to questions in my usual manner and immediately called an ambulance b/c he suspected a stroke. I thought I was quite normal in my responses to the men and thought they'd just go away.

Wrong! As it turned out I also suffered a heart attack while in the ambulance and had to be resuscitated. Of course I wasn't aware of any of this. It wasn't until I read and re-read the reports that I discovered the heart attack, although I'm sure I was told at some point during that time.

In the ER I had two epileptic seizures, fortunately witnessed by the doctors on call. I have two different types of epilepsy, confirmed by tests, and will be on medication for the remainder of my life.

I spent the next two days unconscious (naturally) and autoimmune encephalitis was later confirmed by the Mayo Panel. The same thing occurred a few weeks later....another panel, tests and the same diagnosis.

I did go through last summer without any problems, so I'm hopeful that it will be the last of it, but I'll be forever watchful. If you decide to read the book (an easy read) I think you'll find the symptoms this young woman had were quite different.

In case people aren't aware, epilepsy can become more common as we age. I did have warnings of it, but the seizures were over very fast even though I fractured a wrist during one of the episodes. Keep something like Pedialyte or Gatorade on hand. Don't overdo it, but if you feel strange symptoms at least make certain that your electrolytes are balanced. Just a short time ago, that was thought to be the only reason for AE, but now many other things are coming into question. If you don't want to use Gatorade (especially in the heat...and don't overdo it), at least use iodized salt. I have high BP so it's a constant balancing act. Most sea salts contain minerals but not iodine...Morton's does. I hope I've answered your questions. Yours, Lenora.

 

[PisForPerseverance]

Here was that earlier post I mentioned in case you are in the UK:https://forums.phoenixrising.me/threads/autoimmune-panel-uk-private.84275/#post-2345201

Hi judee, that panel isn't for autoimmune encephalitis, they had made a mistake. Fyi

 

[vision blue]

I just ran Autoimmune neurology and Sensory motor neuropathy panels from quest and got some positives. a

...And a syn-one test. It tests for a few different things, alpha synuclein, fiber density, and something else, in your cutaneous nerve fibers. Needless to say I got some very important health information from my positives.

.

Quickly for now because trying to take action rather than wait another 2 years. When feel a little better (super overstimulated at moment) will try to respond more thorougly. Your response was great as were many others. But questions on above -i've just contacted one doc and requested the mayo encephalitis panel and the cunningham. if he says no, i'll try one more doc that i was able to set up an appt for saturday.

so want to ask about the others you mention. on the syn one you mention that i quote above , is that one of the panels? or seperate tests? which ones? I want to add to my wish list before talking to the doc.

also, you mention "autoimmune neurology" and "sensory motor neuroapthy"- which tests (panels?) did you have in mind for those? I've checked @Learner1 pdf of tests (thanks much btw!)) and it does not seem like any of those that are listed. The quest panel that she lists isn't really geared towards neurology. Ihve had many or those or based on symptoms, don't need them. is there a different one you mean from quest? which one? Same for sensory motor neuropathy. which quest test? A different panel than the autoimune neurology? Sorry to push- i want to text them todayif possible...(I want to give this doc a chance to order before i ask the one saturday)

and then finally, which of yours were positive?

incidentally, so far with the request, i did not mention any of my new symptoms. maybe i don't need to and they will order it anyway.


btw, i've always been my own agressive self advocate. but as one of my (actually one of the smarter ones) said honestly: I don't care how many great journal articles you bring me (which he always hungrilly wanted since he was smart and liked to read), if I haven't ordered it before, I won't order it for you. Most are less honest with their answer but feel the same, if they are interested at all. I mostly gave up begging for things I wanted. mostly. I did get some stuff i wanted but i'm too depleted to go thru it for each thing now. Plus convential medicine has little I can take given the presumed MCAS anyway. i'm an exiler now and mostly do DIY medicine. The med system produced such deep hatred mostly I don't even complain or talk about it much.

 

[vision blue]

thanks everyone! these have been great. have so much to say- but i just can't! not right now. but read everything and so very much appreciate it!!! and it's helping. motivatiating and with enuf concrete info to take action now.

 

[vision blue]

@lenora It's great to more of your story! what did they blurriness turn out to be? the epilepsy? i've been having plenty of vision and eye trouble; too much to write (and too many obstacles from the medical world - resisting temptation to describe the new one today).