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

[rjsquirrel]

Did you have your NK cell count and NK cell activity test done? Both are usually low in CFS/ME

 

[lenora]

Hello godlovesatrier......Yes, we were both very fortunate that we have a definitive diagnosis, although not a lot is known about it. I have to be especially careful in the summer heat and I love being outdoors, so it's a problem. I do go in when it's just too hot, but then I'm generally out early in the a.m.

I was unconscious for most of it, so have very little memory. In my case, I almost died, but my hubby had my Directive with him, so the doctors did have an easier time. I couldn't even understand the loss of so many things, so that could be a bit scary. Still, I'm sure that the author of the book is still having a difficult time in "returning." Now this was a very young person....I don't know if the movie's still on, but it's found on Amazon and is called BRAIN ON FIRE. I don't think any of us know what to make of it all.

Personally, I think the team of very young doctors were an asset. I may be completely wrong, but since the illness is new, it probably piqued their interest , although my neurologist was actively part of what was happening. Lots of tests, indeed. You know, in all these years, this is the first time that I've ever known anyone to have this. What I'm trying to say, is that you shouldn't unduly worry about it yourself. It's treated with steroids. There are enough things to worry about in this world, as it is.

 

[Hoosierfans]

I'm doing the Cunningham and autoimmune encephalitis this week. I just did celltrend. Looks like you didn't get a sfn biopsy and aren't planning to. Do you know why you weren't recommended it if you have neuropathy and burning and autonomic symptoms? Maybe your doctors so far don't know what sfn neuropathy is? Maybe your new neurologist will suggest it.

Did you have an ocd onset? That and other symptoms are what Cunningham panel is known for I'm sure you know, but those antibodies must also have many many other possible manifestations. I did have an acute ocd onset years before I got sick that's why I'm curious.

Hey — oops sorry if my post wasn’t clear. I haven’t had the biopsies yet, but they are scheduled for two weeks from now.

No, I didn’t have OCD onset, but I did have intense anxiety, depression that came on post Mono and then it really worsened after a bout w MRSA. The akathesia slowly came on after the birth of my daughter and just worsened over time.

 

[Hoosierfans]

Hey @lenora i will Pm you as I have a lot of questions. Am wondering what treatments you’ve tried etc. My old neuro tried a course of steroids in the winter, but they didn’t change my symptoms and just threw me into suicidal depression. I almost had to be hospitalized. Anyway, I’ll Pm you. Xoxox

 

[Gingergrrl]

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

I am so thrilled that you were able to get some answers and happy if I could help in any small way! I just read through this thread but I think I missed a few things. Which autoantibodies confirmed that you have autoimmune encephalitis? Did you do one of the Mayo Panels or test positive for anti-NMDA receptor antibodies?

I know you had several positives on the Cell Trend Panels but they don't test for autoimmune encephalitis (unless they have added more tests that I am not aware of). I know that they have definitely added lots of tests since I did the testing with them. I just wanted to make sure that I understood correctly! And congrats again on the good news and I wish you all the best in your future testing and treatments!

 

[Hoosierfans]

I am so thrilled that you were able to get some answers and happy if I could help in any small way! I just read through this thread but I think I missed a few things. Which autoantibodies confirmed that you have autoimmune encephalitis? Did you do one of the Mayo Panels or test positive for anti-NMDA receptor antibodies?

I know you had several positives on the Cell Trend Panels but they don't test for autoimmune encephalitis (unless they have added more tests that I am not aware of). I know that they have definitely added lots of tests since I did the testing with them. I just wanted to make sure that I understood correctly! And congrats again on the good news and I wish you all the best in your future testing and treatments!

Hey love — my internist wrote the Dx, so I *think* he is going off of my Cunningham panel antibodies plus some inflammatory markers I have plus symptoms.

 

[godlovesatrier]

Hey Lenora. I just re-watched the film with my gf - so many symptoms so similair to ME and yet also so different. Very scary and to think I know lyme patients who fit this diagnosis so closely and yet they've been told it's 100% lyme. What if it's not. I dread to think.

Good film but artistic license and too short to convey how long it took. Plus she says "It's crazy to think how many people have been diagnosed schizophrenic and yet they could have had such a simple diagnosis." I obviously got the point but what you two went through sounds anything like simple :/

All the best.

 

[Gingergrrl]

Hey love — my internist wrote the Dx, so I *think* he is going off of my Cunningham panel antibodies plus some inflammatory markers I have plus symptoms.

Thanks for explaining and that makes sense. Do you still plan to do the Mayo Panels? I think it will give you confirmation and also be very helpful for insurance purposes.

Plus she says "It's crazy to think how many people have been diagnosed schizophrenic and yet they could have had such a simple diagnosis." I obviously got the point but what you two went through sounds anything like simple :/

In addition to several films on this topic, there is a great book called, "The Girl on the 6th Floor" by Brian Nichols.

 

[max_yazhbin]

Did you have your NK cell count and NK cell activity test done? Both are usually low in CFS/ME

I have MCS, not MCAS, and my NK cell count was normal, the NK activity was not measured.

 

[PisForPerseverance]

No, I didn’t have OCD onset, but I did have intense anxiety, depression that came on post Mono and then it really worsened after a bout w MRSA. The akathesia slowly came on after the birth of my daughter and just worsened over time.

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.

Do you still plan to do the Mayo Panels? I think it will give you confirmation

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

 

[Gingergrrl]

There could be autoimmune antibodies causing mild to moderate inflammation for so many people.

I completely agree and I wish everyone had the opportunity to be tested for autoantibodies. I was tested by a Neuro in 2016 (who was mean-spirited and just horrific) BUT him sending my blood sample to Mayo for several autoimmune panels literally changed the course of my illness and my life. I did not even know that those Mayo panels existed.

That Neuro told me very arrogantly that every test was going to come back negative (meaning "normal") and that my dysautonomia & muscle weakness were NOT autoimmune but he could not have been more wrong when two of the autoantibodies came back positive which explained why I had progressive muscle weakness that was affecting my ability to breathe or walk without a wheelchair. I really feel passionately about autoimmunity (especially more obscure autoantibodies that do not correlate w/RA, Lupus, or the common autoimmune illnesses that mainstream doctors check for).

Really hoping ivig works for you for many things. I'm feeling tenuously hopeful for me too

I feel hopeful for both of you (@Hoosierfans and @PisForPerseverance) re: IVIG and apologize that I am so slow to get to PM's but definitely will reply to everything.

 

[PisForPerseverance]

(who was mean-spirited and just horrific

Mean spirited healers make no sense to me. It's the most oxymoronic thing. The whole doctors being jerks as a systemic thing is so hard to wrap my head around. I'm on a mission to find out how healers became trained to be the opposite.

I really feel passionately about autoimmunity

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? For the ME community specifically I hope researchers take it up more. The long covid autoimmune study or studies I hope have implications for the way autoimmunity and viruses are understood, and for ME. That would've helped my illness if my virus and ensuing symptoms were automatically connected to my positive ANA a couple months later. I just went right to a rheumatologist who did that standard RA etc panel which was negative, no further investigation.

I feel hopeful for both of you (@Hoosierfans and @PisForPerseverance) re: IVIG

Thank you so much. Eek. Yeah it's like a wave of hope that comes over me. When one treatment has the potential to do so much for my life (heal autoimmune dysautonomia, heal mcas, heal brain autoimmunity, interstitial cystitis, who even knows what else) and I may be able to get it covered for a couple years at least? Woah. The prospect is a little daunting in a hard to believe, please god let it be very helpful, type of way.

 

[lenora]

Hey Lenora. I just re-watched the film with my gf - so many symptoms so similair to ME and yet also so different. Very scary and to think I know lyme patients who fit this diagnosis so closely and yet they've been told it's 100% lyme. What if it's not. I dread to think.

Good film but artistic license and too short to convey how long it took. Plus she says "It's crazy to think how many people have been diagnosed schizophrenic and yet they could have had such a simple diagnosis." I obviously got the point but what you two went through sounds anything like simple :/

All the best.

Thanks, but when these things happen you're almost not present. It was my husband who had to do all the work and suffer the worry. COVID was its peak at the time and he wasn't even allowed to stay at the hospital. Actually, he wasn't even allowed in the hospital and I managed just fine...good care was taken of me. However after I became conscious again, I knew that something bad had occurred as my thinking really was impacted. It's better now, but still not back to where it was....what is, is.

I agree that the film could have been better...it was a bit of a fluff piece in some parts. The seriousness of her illness was portrayed better in the book of the same name. She was very, very sick and thank goodness for probably the last doctor who saw her. Without him, she could possibly be in a mental hospital somewhere.

I found that interesting b/c there is a lot of bipolar illness in my family. They're all dead now, but it did make me wonder about the connection.....just like you wondered about your friends with Lyme Disease. If the brain is impacted in a certain way, mental conditions can result.

I have to say that even the book, 'Brain on Fire' could have benefitted from better writing. On the other hand she must have been very ill when writing it....at least she got the word out and that's what matters. How fortunate she was in her support unit, fortunate indeed. I hope you're fairly well. Yours, Lenora.

 

[lenora]

Hey @lenora i will Pm you as I have a lot of questions. Am wondering what treatments you’ve tried etc. My old neuro tried a course of steroids in the winter, but they didn’t change my symptoms and just threw me into suicidal depression. I almost had to be hospitalized. Anyway, I’ll Pm you. Xoxox

Yes, I received your PM and replied. Sorry that you had a bad reaction to steroids, not the world's greatest joy are they? I'm afraid that I was also in withdrawal from xanax and the steroids had been started, so I started yelling at the staff, the doctors....no one would come near me. I never should have been taken off the xanax, it was a low dose anyway and to top it all, the med he wanted to put me on was just as addictive. That made me rather annoyed.....especially after ??? nights without any sleep.

So yes, strange things happen to our bodies, and somehow we survive. Steroids are necessary in order to reduce the inflammation ASAP. I also have a bad reaction so the neurologist on call made the course as short as possible. Amen to that! I hope you're making progress and are feeling better.

I'll be interested in hearing your story....see, even with AE we all have different stories of how it began....possibly viral onset, but who knows and who knows why? 'Til later....Yours, Lenora xoxo

 

[lenora]

@godlovesatrier.....That's a terrible shame if the health system in the UK is in such bad shape. Now that the focus has been taken away from psychological reasons for ME, perhaps you'll have clinics where you can go to get a proper diagnosis.

I never would have referred anyone to the Mayo Clinic b/c its neurological department was horrid. Lately though, I've been impressed with some of the stories I've heard. It seems that it's a good place to go, so now we have access to even more.

Is there any possibility of getting the blood test approved by the Mayo for use in the UK? A Dr. who acts as liason would probably be necessary....or even better yet, perhaps any new clinics that open will have a blood test similar to the one used by the Mayo. I would even be interested in having the Mayo one done myself.

I've noticed that some newer hospitals actually have computer links to say, the Mayo Clinic, Johns Hopkins....and others. This is helpful and the terminals are in public places for our use. This is progressive medicine. Best wishes. Yours, Lenora.

 

[Learner1]

So glad you finally found answers @Hoosierfans and are finally getting the right kind of attention from doctors - you deserve it after the journey you've been through! Hopefully your story will shorten the path for others.

This is the list of antibody tests I'd shared, collected from patients here on PR. If someone can provide a list of tests not on this list I can update it.

 

[godlovesatrier]

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).

 

[godlovesatrier]

Ok interestingly I just found a site for the cyrex: https://embracingnutrition.co.uk/shop/tests/multiple-autoimmune-screen-cyrex-array-5/

£690, but looks quite comprehensive.

@lenora I just read your last reply to me sorry. Yes it's bad in the UK, very bad and getting worse all the time if you ask me. I am not sure if this cyrex private test is worth my time? I'm willing to get it, but don't want to waste my money. On the face of it it looks like a decent auto immunity panel to rule out quite a lot of auto immune conditions? But I am not sure what it might be missing.

What annoys me is how much all this costs, I can afford to spend the money but I don't have a mortgage and deposits for houses are ridiculous here now. Everything just feels really difficult. But I figure health first? maybe...

 

[Hoosierfans]

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.

@lenora — saw your Pm. Will get back to you soon.
@ Learner1 — I’ll email you the list that I have. It took your list and expanded upon it. I included a few more antibody tests I know of and / or had run, as well as all the immune markers that I had had tested (most upon your suggestion!) like IGG subclasses.

@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.

 

[Hoosierfans]

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