New Diagnosis and New Docs: Autoimmune Encephalitis, SFN and a Neuroimmunologist

[vision blue]

Thanks for info. Im not familiar with cunningham panel and will look up. Iasking because if celltrend is one in germqny i remain suspicious. The rate of positives in normals appears to be high. Plus autoantibodies require careful prep and shipment yet they are pretty casual about how And in what form tblood get maiked (from the US)
But hell if your goal was IVIG and that gets you to get it then great!

 

[PisForPerseverance]

they might come back negative and insirance would use it as a reason, albeit unjustified, to deny coverage for IVIG

I thought about that too for an emg I might do, and my thought was that insurance doesn't get to see anything you don't submit to them. Unless it's in a doctor's notes mixed in with valuable information that you do want them to see. The doctor could plan to keep notes on any negative tests separate.

 

[PisForPerseverance]

@PisForPerseverance maybe I missed it - are you in the process of pursuing IVIG?

I am

 

[lenora]

Oh ok gotcha. I also had acute neurological symptoms, severe anxiety was one of them, starting the weekend I had an unknown virus. A couple months later I tested ANA positive. I got tested after an episode where I felt like I didn't have control over my muscles in some way. That only happened a couple times. That was 8 years ago. I had had no other testing before that besides just standard, because I wasn't sick before that. I had some health problems some years earlier and one was neurological, an acute ocd onset following medication trials for mild depression. Thyroid problem from the same, and eczema my whole life plus major histamine episodes the year before I got sick. If I became ANA positive only after my virus, and there's no way to tell, that could've been autoimmune encephalitis. I'm no longer ANA positive, but I may be now due to some new developments, I haven't checked. Was your first ANA close to when you got sick?

In my limited understanding, what I'm thinking is that autoimmune encephalitis is broad, and that in the future we'll talk about it much more of a broad way. When more known and newly known autoimmune antibodies are linked to inflammation. Autoimmune encephalitis means inflammation of the brain from an autoimmune cause. Brain inflammation is being discovered a lot these days. With depression, I imagine with lots of stuff. Discovered in the brains of ME patients. Already in Alzheimer's, MS?, other things I don't know about. I just feel like this could be a big thing going forward for many conditions. There could be autoimmune antibodies causing mild to moderate inflammation for so many people. In addition to other causes of inflammation. The people getting tested for it through the mayo panel are only people in certain kinds of acute situations. Did you ask for it or did your doctor bring it up? I asked for it. It sounds like many who have even those particular antibodies don't get tested for it as it's still new.

I've read on some medical institution website and probably have seen it here, that viral encephalitis can give rise to autoimmune encephalitis. Sometimes very quickly sometimes gradually. Sounds like that's what you think happened to you and what I'm exploring. Since viral encephalitis is probably what's happening with many (or all) people with viral onset ME, then it goes to say that some or many could have autoimmune encephalitis too, from antibodies linked to and not yet linked to encephalitis. There'd be no way to know yet for the unknowns. Are there other antibodies besides the mayo panel with a documented link to encephalitis?

The Cunningham panel is usually thought of for pediatric autoimmune neuropsychiatric syndrome PANS, or strep specific PANDAS. I'm not sure if any of those antibodies have been linked to brain swelling yet. Does anyone know? It's good your doctor diagnosed you based on that panel when most probably wouldn't even think of encephalitis based on it. That diagnosis is gunna be given a lot of weight with future doctors and insurance and any possible hospital visits to give you the attention you deserve and proper medical care (I hope). It's seriously good news.



I agree... I think it would be important for you to see if you have any of the antibodies on the mayo autoimmune encephalitis panel since some of those are known to cause super advanced stages. @lenora is that how you found your autoimmune encephalitis? I'm seeing the anti nmda one is the one in that film, and what was said that sk2018 was thought to have passed away from if I understood correctly. If you're going there in your mind about possibly losing conciousness in the future, I think it's better to wait to see if you have any of those antibodies. I think that's what @lenora is talking about. You may not have them and may not (necessarily) have to worry about that kind of thing (but I wouldn't know if you should worry or not...). Really hoping ivig works for you for many things. I'm feeling tenuously hopeful for me too

Your comments and questions made me question exactly how they arrived at the diagnosis of Autoimmune Encelphalitis. As I said, my husband wasn't present and I was well....not really home, so to speak.

I'll have to go through my health file and see what type of tests were used. I do know that my neurologist (at another hospital) was in full agreement, and that all parties involved agreed upon the diagnosis. In my case it took about two more days of increased electrolytes to stabilize me....so perhaps that's what it came down to. This wasn't during the heat, though....more like autumn weather. See, I don't even know when it occurred.

Unfortunately, I had to miss my last appt. with my neuro, but there are questions that I'll be asking. I know that I had two spinal taps within about 2-3 mos. of each other....one I was conscious for and the other I wasn't. What were they looking for the first time....I don't remember. Also, other tests were performed, so they did aggressively look for an answer to this problem. Now that I'm thinking about it all, I'm confused again....that will pass, though. It's just hard for me to concentrate on any particular thing for any length of time....just not like me.

Still, I could have ended up with worse brain damage, so I try to take everything into account. We're fortunate to live near good hospitals with good doctors. The ambulance workers were also excellent, and then I passed out. I'll check the lab work and will report back to you. Just not today....I can't do much thinking anytime close to bedtime as I'll definitely not get any sleep. Sounds crazy, I know, but experience has taught me that it's true. I don't talk on the phone after a certain time, do anything that requires energy of any sort. I'm sure you understand. Yours, Lenora.

 

[PisForPerseverance]

Your comments and questions made me question exactly how they arrived at the diagnosis of Autoimmune Encelphalitis. As I said, my husband wasn't present and I was well....not really home, so to speak.

I'll have to go through my health file and see what type of tests were used. I do know that my neurologist (at another hospital) was in full agreement, and that all parties involved agreed upon the diagnosis. In my case it took about two more days of increased electrolytes to stabilize me....so perhaps that's what it came down to. This wasn't during the heat, though....more like autumn weather. See, I don't even know when it occurred.

Unfortunately, I had to miss my last appt. with my neuro, but there are questions that I'll be asking. I know that I had two spinal taps within about 2-3 mos. of each other....one I was conscious for and the other I wasn't. What were they looking for the first time....I don't remember. Also, other tests were performed, so they did aggressively look for an answer to this problem. Now that I'm thinking about it all, I'm confused again....that will pass, though. It's just hard for me to concentrate on any particular thing for any length of time....just not like me.

Still, I could have ended up with worse brain damage, so I try to take everything into account. We're fortunate to live near good hospitals with good doctors. The ambulance workers were also excellent, and then I passed out. I'll check the lab work and will report back to you. Just not today....I can't do much thinking anytime close to bedtime as I'll definitely not get any sleep. Sounds crazy, I know, but experience has taught me that it's true. I don't talk on the phone after a certain time, do anything that requires energy of any sort. I'm sure you understand. Yours, Lenora.

Lenora I'm so sorry. Sounds like your cognitive abilities have been coming back so I'm hopeful it will continue. *Crossing fingers*. I relate to it being very disturbing in the realization moments of "my god, this is not right, I used to be able to do this", or when cognitive abilities start coming back and you realize what you didn't realize before as it was happening. I've never been totally unconscious so I can't imagine how it must be to experience the slow coming back, but I've had / am having my own slow coming back from not quite as severe but pretty severe loss of cognitive function. I think you are pretty coherent and have nice and smart things to say online at least, if it helps to hear that reflection. I wonder if there's any additional support that would assist your coming back. You can always pm me to chat about it

 

[Gingergrrl]

It makes sense that you're passionate about it. Where do you see inroads needing to be made to increase knowledge in doctors and increase access?

I do have thoughts about this but it would completely take this thread off track (and I also have no idea how to turn any of my thoughts on this into a reality in the real world). I guess it would have to start with the way future doctors are trained in medical school.

I think if someone has clinical symptoms of inflammation, of dysautonomia, or a set of symptoms that cannot be explained, especially if they also have a positive ANA, or an existing autoimmune diagnosis like Hashimoto's Disease, then they should be given full autoimmune testing with not only the basic panels but also tests for more obscure autoantibodies. I also think that people with a cancer diagnosis or a new autoimmune disease diagnosis should also be checked for paraneoplastic autoantibodies.

Just found out today that due to brexit most London clinics are having real problems getting blood tests to Berlin on time (which is where most of the primary labs are). It sounds like this is more common than rare. So it does make me wonder where the hell someone in the UK goes now if they want to get blood tests done (that aren't a waste of money).

Do you mean specifically when someone in the UK is trying to send blood to Cell Trend Lab in Germany or do you mean in general that all blood-work in the UK is sent to Germany for processing? I just want to make sure that I understood correctly?

Hey all! Wow so much caring and love on this thread...it really is making me feel so cared about and cared for. I hope my journey will be useful for others, as @Learner1 said, to hopefully shorten or improve someone else’s.

I feel the same way and really want the journey that I went through to be helpful for others in the future. It makes me feel like my suffering had some purpose and it was not for nothing if it can help someone else down the line.

@Gingergrrl re the Mayo antibodies — we are holding off on those for now. My internist had an interesting thought — since I’ve tested positive on the Cunningham and CellTrend, he wants to go ahead and pursue insurance coverage for IVIG based on those plus my symptoms alone. He’s a bit afraid that if we do the Mayo panels, they might come back negative and insirance would use it as a reason, albeit unjustified, to deny coverage for IVIG. So we are waiting until I see the neuroimmunologist to get his take on strategy etc.

I completely understand what you mean and it is a very tricky situation re: insurance authorization for IVIG (especially high-dose IVIG for autoimmunity). You have to be very strategic, which is a sad state of affairs, but it is the reality.

In my case, it was the two positive Mayo autoantibodies that led my main doctor to pursue IVIG so I already had the Mayo results before we started (in addition to the abnormal Cell Trend tests, the positive ANA titer, the abnormal EMG, 4-5 abnormal PFT (pulmonary) tests, abnormal TTT's & QSART, tons of abnormal blood-work, a long-standing Hashimoto's diagnosis, MCAS & anaphylaxis, etc). I had other random tests that were "normal" and did not work in my favor but my doctor did not include those in the battle for IVIG.

asking because if celltrend is one in germqny i remain suspicious. The rate of positives in normals appears to be high. Plus autoantibodies require careful prep and shipment yet they are pretty casual about how And in what form tblood get maiked (from the US)
But hell if your goal was IVIG and that gets you to get it then great!

I actually believe that the Cell Trend tests show autoimmune POTS (and other things) as does my doctor. I know many people from PR who were negative on all Cell Trend tests so they definitely do not tell everyone across the board that they are positive. They also have nothing financial to gain b/c they are in Germany and no matter what treatment I pursue in the US, they do not benefit from it. I do agree w/you though re: Fedex and many people I know got into a situation where their serum sample did not arrive in time to Germany for it to be valid.

I thought about that too for an emg I might do, and my thought was that insurance doesn't get to see anything you don't submit to them. Unless it's in a doctor's notes mixed in with valuable information that you do want them to see. The doctor could plan to keep notes on any negative tests separate.

I agree with this and if you have a doctor who is on-board, they can choose which tests to give to your insurance (as long as you have paid privately for those particular tests and did not go through insurance). In my case, all my blood-work through Quest & LabCorp is billed through my insurance but other things like Cell Trend were completely private and they would not know anything about it. I hope that makes sense!

 

[godlovesatrier]

Looks like all blood work to me. London Clinic of Nutrition are having this issue. I'm sure others are too.

 

[lenora]

OK....with my husband's help, all records of my AE were pulled together. Yes, I had the Mayo test and I actually had two attacks of AE. I also had two spinal taps each time, considerable radiology tests and of course non-stop bloodwork.

My first attack was in May of 2019, and I also presented with congestive heart failure (I'm not your normal patient....6 stents now, familial high cholesterol and high BP after having POTS for many years).

Rod tells me that I actually had problems in the ambulance and it was a good 20-30 minutes before they even left our house, so I was right about that, I did almost die. I can also remember the same thing occurring at the hospital when I was then unconscious for two days.

In January of 2020 I had my second attack. Again the Mayo panel was done and proved that I did have AE. Now my problem is in remembering the before, during and after effects of that time. I was out of the hospital in about 8 days. I wasn't aware that I'd had attacks of AE on two different occasions and somewhere in there the seizures were also diagnosed. Like I've said before, my neurologist has told me that I'll have to be on keppra for the remainder of my life. I'm not even debating that b/c I know it's to prevent even more memory loss and I don't want that. The psychiatrist was absolutely necessary, so don't look at it as punishment or not being believed. They're merely assessing the damage.

I have both types of epilepsy....and whether that has anything to do with the AE, I simply don't know. These matters will be brought up with my neurologist in Sept./Oct. I had an appt. just last week. Of course I'll promptly forget the answer, but Rod will remember.

Now if it's electrolyte driven I don't understand why I had occurrences in September and January....they aren't problem months at all. Perhaps I'm atypical in that I also have been diagnosed (and know I've had them) with epileptic seizures. Broke my wrist b/c of one. Perhaps even epilepsy and AE go together to a certain degree. I may have that for a much longer time periods before it truly manifested itself. I have had brain surgery...so I suppose it's possible.

So then the biggest surprise on top of all of this, was the number of stents I required both in my heart and then in my right carotid artery. The latter may have improved the blood flow to the brain, but who knows? The cardiologist feels that it did. There are no answers b/c there really aren't any answers to give.

I feel especially bad for those who are younger. I would watch your electrolytes carefully, I take a supplement in addition to extra potassium/day and extra mg. a few times/wk. At night, I can feel that my eyes are once again having the same symptoms, so I'll add even extra potassium if that occurs. All of our reasons may be the same, or different in each case. I'm sorry that I'm not being more helpful, but I'm only giving you what my records show.

The only other thing I would ask about if it occurs again (in your case) is a spinal tap which can relieve fluid build-up and rule out many problems. It's not what it used to be, and apart from having to be flat for so long, isn't a bad test at all. It's also over rather quickly. That's the only other thing I can think of at this time...at least it would rule out if it's viral encephalitis (as the root cause) or is something else....such as AE.

Above all, it's those electrolytes that I take very, very seriously. You should know that sea salt (most types) does not include iodine and that's important to our bodies.

I'm sorry that I can't give you more follow-through, but I'm as lost as you are.

Personally, I'm not worrying about more attacks b/c last summer passed without anything happening, I did watch my electrolytes, but also sat outside on our porch during very hot weather. I'm no fool though, I don't want a repeat of this and if it's too hot, (and I perspire a lot) I'll head into the air-conditioning. Don't like it, but it's good to have in this climate. If I can answer anymore questions, I'd be happy to. Yours, Lenora.

 

[PisForPerseverance]

OK....with my husband's help, all records of my AE were pulled together.

Thank you for sharing your story Lenora. It will help people who are investigating AE now and in the future. I hope it gave you some grounding as to what happened to you.

 

[lenora]

@perforperserverance.....The above should answer some of your questions. My thinking is slowly coming back, but boy that was sure a blackness when you questioned me yesterday....I simply couldn't remember.

I think a lot more people have viral encephalitis and recover, albeit I don't know about memory issues. For those of us with immune problems, it becomes something else. Perhaps we've had a double-pronged attack, I don't know. There are just a lot of unanswered questions at the moment.

Thanks for your kind offer about PM you to discuss memory issues. Funny thing is that would have said I was doing much better until I seriously began to think about when this last event occurred. And then to find it that it happened twice within a matter of months was quite a shock, although I do remember being very ill at Xmas dinner that year. (i was hospitalized just a few days later.) We had the entire family here....and I really couldn't get out of bed, just up and back in bed...throughout the whole meal. The entire day, really. I just assumed it was exhaustion from going to our daughter here in Dallas for dinner the evening before.

I'd like to say I'd know better it if it occurred again, but I'm not going to say that. I wish I could, but I can't...at least at this point.

Out of interest, does anyone affected by this have a hard time with insomnia? Just trying to put pieces together. Thank-you. Yours, Lenora.

 

[Hoosierfans]

I am

Awesome! For autoimmunity or SFN or something else? Where are you in the process — I understand it can be quite a complex process.

Hopefully we can hold hands together throughout the process ans our recovery!

 

[PisForPerseverance]

Both depending on my test results. In a few weeks I'll submit.

Hopefully we can hold hands together throughout the process ans our recovery!

I'd love that!

 

[joshua.leisk]

@Hoosierfans has had an amazing journey! It'll be very interesting to see how the doctors distinguish autoimmune encephalopathy from the hepatic encephalopathy we're describing.

I came across this article recently, which neatly describes what we've been talking about -
https://journals.biologists.com/dmm...onia-inhibits-energy-metabolism-in-astrocytes

 

[lenora]

Hello Autoimmune Encephalitis Patients: Something else occurred to me as this has been playing with my mind.

I have really severe allergies and they've been getting worse year by year. Now after my AE attacks, they're never-ending. Mast cell activation? At my age, they should be lessening instead of getting worse. I'll soon be living in an RV in the desert, too.

Any other problems that any of you have noticed? In spite of easily becoming a hypochondriac, my mind tends to lead me in another direction. So I don't worry about symptoms as they enter my life...either those of my own or other people, so don't let that stop you from mentioning anything.

It's a good thing that I like puzzles, or at least, used to. Yours, Lenora.

@Hoosierfans has had an amazing journey! It'll be very interesting to see how the doctors distinguish autoimmune encephalopathy from the hepatic encephalopathy we're describing.

I came across this article recently, which neatly describes what we've been talking about -

https://journals.biologists.com/dmm...onia-inhibits-energy-metabolism-in-astrocytes

Well, it's an interesting comparison. Things seem to be getting more complex all the time, don't they. Thanks to both of your for your assistance. So many questions; so few answers. Yours, Lenora.

 

[lenora]

Correction: In recent post, it should have read that "Instead of easily becoming a hypochondria, etc." The way I worded it indicated that I was a hypochondriac. No, so many years and symptoms have come and gone that nothing really surprises me any longer.

I'm sure my memory will dredge up a few more thoughts that may be of some use to you younger folks. I'll let you know as and when they come. I want to help you in any way possible.

@Joshua leisk.....Interesting about the hepatic encephalopathy. There are many similarities to what occurred to me. I don't know how one prevents such things. As Alice said, "It just keeps getting curioser and curioser." (Lewis Carroll....Alice's Adventures in Wonderland.) Yours, Lenora.

 

[lenora]

Awesome! For autoimmunity or SFN or something else? Where are you in the process — I understand it can be quite a complex process.

Hopefully we can hold hands together throughout the process ans our recovery!

@Hoosierfans.....Very sweet reply. I'll hold your hand and that of anyone else who needs it, at anytime.
Be positive....and stay well. Yours, Lenora.

 

[crypt0cu1t]

Hey all!! It's been a LONG, STRANGE trip as they say, but after over a half of a year of testing (still more to go), we FINALLY have a definitive diagnosis that fits my symptoms and disease progression! I've had so many people here who have offered so much help to me over the last 2+ years, that I would be remiss if I didn't start of with a big THANK YOU to @Learner1, @Hip, @mitoMAN, @Gingergrrl, @crypt0cu1t, the late SK2018 (for sharing his story) for answering countless questions, suggesting testing and physicians, pushing me to continue to dig down for answers...all of which have ultimately led me to a definitive diagnosis and new physicians with new treatment plans in the very near future! . For more than 10 years I've chased various "suggestions" by various medical professionals and mostly functional medicine docs -- its Lyme! It's co-infections! It's mold! It's thyroid! It's [fill in the blank with their pet issue de jure}. But none of it ever *quite* fit my symptoms, nor did I get better with their suggested treatments (some of which went on for years -- hello antibiotics!), and usually was supported, at best, with "patterns" in my bloodwork suggestive of that particular diagnosis (i.e. CIRS /mold) but the markers of which could have indicated any number of other issues.

My diagnosis: Autoimmune Encephalitis with Comorbid Small Fiber Neuropathy and / or Chronic Inflammatory Dymelinating Neuropathy

Symptoms: Intense dizziness 24/7, lightheaded, hypotension & POTS, brain feels 5 x larger than my head, skin / nerve burning all over arms, legs, face and inside my brain, cognitive decline (used to be an attorney, now I have severe difficult following a recipe), severe memory issues, akathesia, intense anxiety, depression (sometimes bordering on suicidal), fatigue, food sensitivities, sensory sensitivity (especially multiple people talking or sounds at one time).

Current ME /CFS scale: Severe

I wanted to start this post to pass along any knowledge I have gained along the way, and in case anyone else sees themself in my symptoms. This started with mono for me in 2006, and I've seen over 50 physicians all over the country. But they all seemingly missed doing the right tests or digging down enough, until I started working with my current internist last fall. I've been accepted into the practice of a neuroimmunologist whom I will see in about two months, and I anticipate that we will be pursuing IVIG and possibly meds like Rituximab etc. So, this thread will track my progress. I also have an appointment with an immunologist who specializes in PANDAS / CANS and will be meeting with him to get his opinion on how to proceed.

I am so grateful to this community and the wealth of knowledge it has. I have brought several pieces of information regarding testing, medications to try, clinical studies etc. to my internist from this group...and that led him and I to where I am today -- with FINALLY a definitive diagnosis and treatment path that can get me healthier.

Wow that's amazing! What was used to get you a diagnosis? I'm really happy for you

 

[junkcrap50]

What was your illness onset or trigger? Was it viral trigger? How do you think you developed auotimmune encephalitis? Can viruses induce autoimmune encephalitis? I suppose that's the big mystery as to why so many CFS patients have autoantibodies of different types (probably prolonged immune disregulation/dysfunction leading to autoimmunity). But still thought I'd ask the question incase you had an answer or read some literature about it.

 

[crypt0cu1t]

Any update? Have you started treatment yet?

 

[Hoosierfans]

So my initial onset was viral (mono in 2006) but Effexor, Florinef and Klonopin got me out of bed and back to work after 5 mos in bed. I had two cases of MRSA in 2007/2008. After that, any attempt to taper the Effexor resulted in crazy symptoms I never had before....then I had my second child in 2010 and it’s been a steady slow decline since then.

So I’m not sure what the trigger was — the original mono? The cadre of psych meds they put me on? The dx of lyme in 2013 which led to years of ABX? I don’t know if I will ever know....