What are symptoms of autoimmune encephalitis?

[lenora]

Hi vision blue.....No, apparently the blurriness was caused by the autoimmune encephalitis. I probably didn't do a very good job in the last paragraph of my response.

You could try a glassful (no more than 8 ozs.) of say the Gatorade and see if that helps the blurriness. In my case, the blurriness I'm having now relates to an eyelid problem I'm having at the time, or so I think. I was just at the opthamologist's office about 2 wks. ago and even with the blurriness received a clean bill of health. I have had cataract surgery and allergies, so who knows what causes what?

Let me repeat that the blurriness I feel was caused by the AE, not the epilepsy at all. I'm on new meds for a number of things, and some do cause blurriness....it just all gets so confusing and complicated, doesn't it? Many of the side-effects of the meds wear off after a few weeks, so I have to stick them out anyway. My BP is extremely high, as well as cholesterol...and I already have a 6 stents, so I'm not looking for more. And I'm not even a big person....it's called "familial" and my father did die at 40, so I'm told I'd better take it seriously. Well, I heard that message....it's not the dying, it's the problems in between, such as strokes that leave you disabled, etc. My diet is remarkably healthy, and I don't know where the epilepsy came from. These not-so-great genes that are mine, I guess.

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.


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.

I agree, I would begin with a new neurologist, preferably one who hasn't been out of school for too long. This younger group is just more in tune with computers, the latest info and see many other things. I've been very fortunate with my old neurologist (we started off together as kids and are now retiring), but he has someone who needs him at home and I alternate between a new neurologist and my original one. He has been exemplary, has helped me through many hurdles, identified diseases not known about at the time, but all good things, etc. The newer one has provided me with other info that I didn't have.

As far as the red X on your chart, I really wouldn't go overboard with worry. How many of us reach our older years without some big blemish on our charts? It's better to be truthful, tell the physician your concern and ask him what is being put down. So many things go by codes today, so there are often places for them to "hide" things. But the important thing is that you want/need an answer to your problem.

If the diagnosis is autoimmune encephalitis, then even that could be a psychiatric condition. See what I mean? I'm not saying it is, but it's something that has to be looked into and weighed carefully...that means a psychiatrist has to interview you, perhaps even a number of times. The reason: Brain damage. I was interviewed for probably 5 days and came out of everything just fine.

Even if you don't have obssessive thinking, it's possible that you have anxiety. I don't know your age....I certainly never had problems until my first surgery, I controlled it myself for years, and then a number of years later I had problems, went on a non-addictive drug on as needed basis and that was fine for at least 10-15 yrs. And then.....shingles. Three attacks one right after the other, a fourth was some years earlier when I was young and was mild in comparison to what was to come. Then I had to move to xanax and take a small daily dose, which is still controlling everything after 6 years or more. If shingles doesn't drive you out of your mind, then nothing probably will. This was before the antivirals were in full use, which I couldn't use anyway b/c of other weird infections, and well.....! No point in going into it all.

Definitely call around until you find someone who can offer some specialization in AE. I just recently went through finding a doctor this way for something else, but the payoff has been huge. As a new patient, you'll probably be seen ASAP. Most fairly new doctors will spend time with you, like hearing your story and actually have an hour or more between patients. I hope you'll find one like that.

I would help you more, but there are so many newer and more up-to-date tests than I know about...so I'll leave it someone like @PisForPerseverance to advise you. The Mayo Panel confirmed that I did have autoimmune encephalitis (and yes, encephalitis can cause autoimmune encephalitis). I also had two spinal taps (lumbar punctures) done just a few weeks apart. The doctors were extremely thorough in their tests and for that I'm grateful.

I agree that autoimmune encephalitis is a fairly new disease and things are being found out about it constantly. There are many types of encephalitis, as I'm sure you're aware. Never in my life, did I even give encephalitis or AE a thought. Why worry about that, when there are so many other things? I hope you'll find some relief from your symptoms (and answers) soon. Yours, Lenora.

 

[PisForPerseverance]

The four tests that I mentioned first are linked and this is the syn one Syn one it tests for phosphorylated alpha synuclein, small fiber neuropathy, and amyloidosis. If you're going to get a small fiber neuropathy biopsy anyway and i highly recommend it then if you use this lab you also get to know about alpha synuclein. It's only newly available that it can be detected in the nerves and it's important for early detection or any stage detection of four neurodegenerative disorders for which autonomic dysfunction is often a feature.

"Clinical use case examples for PAF
• If you suspect PAF, but the patient does not have access to an autonomic expert
who can confirm the diagnosis
• You have a patient who experiences unexplained orthostatic hypotension
• If you have a patient with autonomic failure and you are trying to determine if this
is an autoimmune autonomic neuropathy or a synucleinopathy"

It's being found out of harvard in the nerves of some people with autonomic dysfunction and neuropathies that don't have any symptoms of those neurodegenerative disorders, or don't have them yet but may develop them, and hypotheses are being made about that. It's a good thing to get.
Cutaneous alpha synuclein deposition in postural tachycardia patients

And here is the mayo Autoimmune dysautonomia
I have vgkc and ganglionic gm1 igg so far and waiting on mayo and cunningham. I'll tell you the other result privately because I am in shock.

i've always been my own agressive self advocate.

good I'm with you and I support you.

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.

what the hell

Plus convential medicine has little I can take given the presumed MCAS anyway.

I feel you but don't give up on treatment options (obviously you're not) and novel treatments.

The med system produced such deep hatred mostly I don't even complain or talk about it much.

Exactly.

 

[Wanja]

The four tests that I mentioned first are linked and this is the syn one Syn one it tests for phosphorylated alpha synuclein, small fiber neuropathy, and amyloidosis. If you're going to get a small fiber neuropathy biopsy anyway and i highly recommend it then if you use this lab you also get to know about alpha synuclein. It's only newly available that it can be detected in the nerves and it's important for early detection or any stage detection of four neurodegenerative disorders for which autonomic dysfunction is often a feature.

"Clinical use case examples for PAF
• If you suspect PAF, but the patient does not have access to an autonomic expert
who can confirm the diagnosis
• You have a patient who experiences unexplained orthostatic hypotension
• If you have a patient with autonomic failure and you are trying to determine if this
is an autoimmune autonomic neuropathy or a synucleinopathy"

It's being found out of harvard in the nerves of some people with autonomic dysfunction and neuropathies that don't have any symptoms of those neurodegenerative disorders, or don't have them yet but may develop them, and hypotheses are being made about that. It's a good thing to get.
Cutaneous alpha synuclein deposition in postural tachycardia patients
View attachment 43363
View attachment 43364And here is the mayo Autoimmune dysautonomia
I have vgkc and ganglionic gm1 igg so far and waiting on mayo and cunningham. I'll tell you the other result privately because I am in shock.
good I'm with you and I support you.
what the hell
I feel you but don't give up on treatment options (obviously you're not) and novel treatments.

Exactly.

The Website says the test kits are only available to US clinicians... does this mean i cant take this test at all?

 

[vision blue]

@PisForPerseverance
Thanks again very much. Have copied assorted inks on the biopsy etc

I was about to ask u for links to the two quest tests but now finally see the links were included originally- had not seen that the titles were themselves links. Overall i think the mayo ones better fit my situation if was licking just one lab tho wish i could pick a couple off that list too

Not sure im ready for punch biopsies, three of them no . Saw a friend who had one from a detm and it was an awful deep wound. I would twke months to heal. But great to know about this since if i do ever have to get a test for small fiber neuropathy anyway (to get something i want) then i sure would rather get this one.

 

[PisForPerseverance]

Ok just fyi the quest autoimmune neurology I think has everything on the mayo encephalopayhy autoimmune evaluation but quest has more. I looked at them more closely. If I had done just that mayo I would've missed the vgkc. Now from reading about it I see that quest panel is meant to be for many autoimmune neurological syndromes including all encephalopathy antibodies that are well known and ones associated with neoplastic conditions. With mayo, the encephalopayhy antibodies they test are less, and they have a separate one for neoplastic. I put them both here for you to compare. Quest autoimmune neurology has 37 antibodies they test first, and then go onto others if they are positive, and mayo encephalopathy has only 21 they test first. I didn't know that when I requested both. Then a dysautonomia one would be separate.

From your nerve pain I think the sensory motor neuropathy panel is important to find out... what do you think? I just understood from the neuropathologist doing that alpha synuclein research that your symptoms of nerve pain in the chest and head are symptomatic of non length dependent neuropathy if they are mostly there and didn't start in your legs and go up, so depending on location and how it's progressed I think it would be good to see what the testing is for non length dependent neuropathy. But you can have one or more types of neuropathy and one or more causes for each type. The ganglioside gm1 antibody I have is associated mostly with motor axonal but I'll be doing more investigation to find out. Laboratory diagnosis of peripheral neuropathy (this is a white paper on that)

The skin nerve biopsy shouldn't leave a deep mark at all so did your friend have a serious disorder with healing? Are you sure hers wasn't a nerve biopsy, which though they're both nerve biopsies a nerve biopsy refers to deeper rather than the surface skin biopsy. I think I have some wound healing issues with heds now but it doesn't show itself majorly (yet) but mine healed I guess the way they should according to the description of one of the doctors at the lab and what I was told when I did it. It just scabs ups pretty quick. Tiny little baby things that after a day with guaze without any real bleeding a little bandaid is fine. I had some pain later on that day and took tylenol for it. Anyway not to discount your prediction of how it'll go for you you know your body but I wanna make sure we're talking about the same thing.

 

[PisForPerseverance]

https://forums.phoenixrising.me/thr...s-to-get-the-care-we-need.84303/#post-2345795

 

[vision blue]

An update on how it went:

I'm now deleting this post. thank you so much for all who read and responded to it. Will be posting more updates when they occur.

 

[Wanja]

Could you explain what meds you wanted him to prescribe and why?
Its interesting as i never heard of them in the cfs context.
Did you ever try antivirals?

 

[vision blue]

@Wanja Hi. I just sent you a private message.

 

[vision blue]

, most doctors i saw dont even wanna talk to me for 3 minutes even tho i barely could walk trough the door. lol

Could you explain what meds you wanted him to prescribe and why?
Its interesting as i never heard of them in the cfs context.
Did you ever try antivirals?

Alot of the meds were not entirely related- vagal nerve simulatior because there's some evidence that stimulationg the vagal nerve stimulates the parsympathetic nervous system which in turn turns off the sympathetic nervous system. Some of us (like me) have trouble with excess sympathetic activity. The methyldopa or guanfacine are a type of alpha agonist that in some with dysautonmia (which i also have and which some with CFS have) helps. Can't remember the mechansism. Good appreantly also for attention issues. LDN=low dose naltroxene and some have disucssed it here as well - theory i think is by blocking the opoid receptors, body produces its own, which in turn affects T cells and downregulates them. Helps some, and not others.

In this case i wish we had spent only 3 minutes talking. It was draining. if you're imigaing all the time with him carefully listening, with the opportunity for me to tell him everything, that would be the wring image.

(Also, please see the message I sent you)

 

[Wanja]

Alot of the meds were not entirely related- vagal nerve simulatior because there's some evidence that stimulationg the vagal nerve stimulates the parsympathetic nervous system which in turn turns off the sympathetic nervous system. Some of us (like me) have trouble with excess sympathetic activity. The methyldopa or guanfacine are a type of alpha agonist that in some with dysautonmia (which i also have and which some with CFS have) helps. Can't remember the mechansism. Good appreantly also for attention issues. LDN=low dose naltroxene and some have disucssed it here as well - theory i think is by blocking the opoid receptors, body produces its own, which in turn affects T cells and downregulates them. Helps some, and not others.

In this case i wish we had spent only 3 minutes talking. It was draining. if you're imigaing all the time with him carefully listening, with the opportunity for me to tell him everything, that would be the wring image.

(Also, please see the message I sent you)

Yeah i know LDN and wanted to try Abilify too...

I also heard about the vagal stimulation.
First i thought my neurological issues and gastro issues could be triggered by a damaged vagus nerve or something.

I am oretty sure i have dysautonomia as well, i mean all the stuff that is happening in my body... The tingling and blood circulation issues... Maybe i should try them as well

 

[PisForPerseverance]

Reading this I feel truly devastated. How could that be care for sick people. That help to feel better and survive is a devastating drain of getting chopped down, a fight for your life, when you should be cared for, healed, supported in your incredibly weak state fighting for your life. Something so serious is happening to you and......
You are a beautiful individual (I don't really know you haha but you seem nice!) who deserves to be helped the way all humans do. I just don't understand how suffering can be so unattended to, so unmet. In general, for all us, and in our healthcare right now in general. It's so dehumanizing. I feel so sorry and I wish I could erase that for you and replace it with the correct experience. When can you see another doc? What can you do for yourself today to comfort yourself.

I was hopeful for you today when I saw you posted that you would've got what you needed

 

[lenora]

Yes, emotional lability is a symptoms of autoimmune encephalitis, but that generally comes after the attack...or so I'm led to believe. Good to bring it up, though.

@vision blue blue, I would strongly encourage you to see a neurologist if you haven't....it's just that so many other problems should be ruled out and that's the person you need to see in order to have the proper tests and diagnosis made.. If he should suggest a psychiatrist, go....this is part of the new medicine and if auto-immune encephalitis is involved, they're often needed to help the neurologist locate the exact area of the brain involved. This is now being used in pain management also, the changes occurred about 2 yrs. ago.

As far as oral surgery....let's just say that I can always count on it to cause some other problem. Rather like taking your car into the garage! While they really do try to make you comfy, something is always pulled out of shape and hurts, plus the overall work in your mouth. I would also encourage everyone to see their dentist at least twice a year as many big problems can be caught in earlier stages where something can be done. Besides, having implants, etc., is an expensive proposition. We seem to have a lot of dental problems....I don't know if it's the illness, the meds (and vitamins, etc.) or what, but they can show up suddenly and we do need a competent and willing dentist. So it doesn't surprise me that you haven't felt great after oral surgery. Yours Lenora.

 

[vision blue]

@PisForPerseverance Those are very kind words- thank you very much. They are also phrased in a way that is unusual - and very poetic and pleasing. Yeah, it really is nuts - although in other contexts, i love to banter, sure wasn't appropriate this time. Every now and then i resurface from DIY medicine but time and time again, it's just to confirm our medical system is not for me. I butt heads. Being convinced I'm smarter than all the docs doesn't help and now the lack of impulse control from this brain on fire thing means I act on it. Still curious about the result you were shocked by... On the punch biopsy, no friend did not have a nerve biopsy. He was at the derm for some unrelated reason- and they asked if he'd be willing to take part in a study- which would require a punch biopsy- he said sure. He should it to me and it looked like a deep oozing wound. and he looked so sad! like he had been harmed. True he has a low pain threshold, but it was after I saw him and the wound.

@lenora - that's intersting- the emotioanl lablity comes afterwards? i would not be surprised if i've had reapeated attacks and perhaps the aftermath is what i'm now noticing. In terms of neurologist, first of all was trying to get blood tests ordered w/o risking an inperson visit (have not taken vaccine). Also not clear theyd go right to the blood tests i ordered w/o jumping through hoops i don't want right now: mri, spinal tap, think i also need an mra.I also cannot handle having to prove my symptoms to anyone else at the moment.

i do hope i don't end up in an er: head pains, stiff neck, vaguely nasous, still cogntive issues in writing words like i used to, emotional changes. The point i guess of trying to do it in a less awful way hasn't been working. Pissed when i think about alot- i mean if a patient says they can't get themsleves to do something like a blood test , why not just believe it? why grill me- I don't know how to describe what stops me from doing that and near everythign else- feel sick. Also annoyed at the question when given a long list of symptoms: "what bothers you most?" He asked that too (answer after long delay- i said (aafter first saying many times, i don't know but getting stared at ) guess the non stop adreniline- that started the well, there's beta blockers...ok, i guess i shoujld just stop reliving it and move on. I do know the stress of yesterday has caused a nerve pain flare - whether that's becasue the virus is replicating from the stress i don't know since it was a pretty fast reaction for heavier viral load. maybe just when youve got neuralgia, any stressor makes it worse.

@Wanja Forgot to mention- yes, tried antivirals which did work but they get me too sick to stay on them. even for 3 days.

 

[PisForPerseverance]

You're welcome vision blue, you do deserve care. What's next? Can you take a look at those autoimmune encephalitis doc listings I posted on that thread and see if there are any near you? Some might do a telehealth and can order bloodwork and other tests before you see them for a follow up. I'm not sure.

 

[vision blue]

All would require in person visit. Going to try today one other doc who might call someting in; if not may also call a neuro i liked and explain the issue of not wanting to come into hospital but needing test. long shot since been too long since i saw him; i think even if i had first appt on a monday monrning the office is risky cause its smack in the middle of an actual inpatient hospital

 

[lenora]

Hi @vision blue.....Almost all of my doctors are inside hospitals and as long as you wear a mask and use the anbibacterial soaps (which are everywhere) you should be just fine. Disinfectants are used constantly, including on the chairs that people have used.

You temp will be taken, without touching your forehead. That's also fine.

I don't think any Dr. will order tests without examining you first...after all, where are they to start? So I would make an appt., and really go for it. People aren't allowed in without masks, so that's not a big concern. The staff and the Dr. will also wear one. You'll be fine. Yours Lenora.

 

[ChookityPop]

Sorry you experiences this.

"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 have something like this at times but it has luckily been far between each time. I have terrible sleep quality at times that as well. In my case it gets better.

The worst times I have had what feels like brain inflammation it felt like someone had scratched the top of my brain with an old crispy towel. Incredibly unpleasant and warm feeling in my head.

I think that If I had done a PET scan it would show brain inflammation at least when it felt like that.

 

[PisForPerseverance]

All would require in person visit. Going to try today one other doc who might call someting in; if not may also call a neuro i liked and explain the issue of not wanting to come into hospital but needing test. long shot since been too long since i saw him; i think even if i had first appt on a monday monrning the office is risky cause its smack in the middle of an actual inpatient hospital

hi vision blue. I was talking about doctors listed on autoimmune encephalitis organizations that I posted on that thread about autoimmunity. So you can get actually investigated by someone who knows how to do that. Getting antibodies is only part of the picture and best practice according to the AE Alliance clinician network is to diagnose clinically before getting antibody results as to not delay treatment. I want you to get the help you need in this time. Maybe none of the ones on those lists will be available to you with your insurance or location, but anyone on those lists is worth trying to get a telehealth with if you're not near them. You can also try looking up "autoimmune encephalitis" plus your area. Not that you necessarily have that but your symptoms of cognitive and emotional changes with a sudden onset and worsening are what's typical with encephalitis. Do you need any help choosing docs to reach out to from those lists? If so you let me know.