Possible Autoimmune Encephalitis

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Hi everyone once again. I'm currently waiting on word to see a neuroimmunologist in the hopes of finding answers after battling worsening, disabling brain and head symptoms for 5 years now which I suspect at this point to have neuroimmune causes.

Just now, I continue to deteriorate with this seemingly rare 'degenerative' brain fog I've been experiencing. My head now constantly feels like the equivalent of a joint with severe arthritis whenever I use my brain to think, or even just to feel any kind of emotion. My brain seems to be so heavily inflammed, to the point that it feels inflammed and that something is activily aggrivating my brain and making it worse, completely independent of everything I do or don't do in the hopes of relieving these symptoms. Being so far gone with it and at 27 years old now, I feel that the whole life I once had ahead of me as a young adult has been stolen from me, all because of this one symptom, brain fog. What gives my life any meaning and purpose now is to find a way off of this sinking ship of mental and emotional decline.

After years of research, I'm now suspecting that there could well be autoimmune causes to these brain issues I've been having all along. I've explored many avenues including thyroid disorders (also autoimmune in most cases, causing a similar onset and progression), Lyme disease (I've considered Neuro-Lyme) neurodegenerative diseases resulting from infections and viral-induced intracranial hypertension. But after hearing of mild seronegative cases of autoimmune encephalitis causing an almost identical onset and progression of symptoms, particularly with this unusual manifestation of brain fog I speak of, a case of this could well be what I've been suffering from all this time.

That sudden, abrupt onset of flu-like symptoms with severe brain fog right from the onset, then the brain fog following a steadily worsening course (with mild fluctuations at times) with other worrisome symptoms developing alongside it as it further progresses, with nothing moving the needle on it the entire time, suggests autoimmune causes. I stumbled across Alanna Yee's "wherearemypillows" blog, which has resonated a lot with me, especially the posts on brain fog, and has given me more reason to suspect autoimmune causes. Alanna also made some very good points on the actual definition of brain fog, and deciding when your brain fog is severe enough to warrant medical attention from doctors (like if it impacts every aspect of your functioning and can't work or live independently because of it like in my case, as opposed to just mild forgetfulness once and a while like losing your car keys).

I'm be seeing a neuroimmunologist very soon, who I'm hopeful can give me further answers on this and finally make some progress towards an actual diagnosis. Until then, I'll keep you all posted, here, on other forums and in the Facebook groups. Anyway, best of luck to everyone on your journeys to better health!
 
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Hi. Let's learn and help each other :) https://forums.phoenixrising.me/thr...s-to-get-the-care-we-need.84303/#post-2345806
I'm sorry for what you've been through :( you've got one very important step down, seeing this neuroimmunologist. What do you think about this neuroimmunologist? Do they have a reputation for listening to their patients and being helpful with investigation? Is there a way for you to find out? Do they have experience with autoimmune encephalitis?

I suggest you bring in excerpts from studies to them and list of antibodies with associations to your symptoms. Unless you can't do that right now. You'll find help with that on that thread and you can just jot down stuff you see. Something to keep in mind is that whenever there are lists of symptoms, you don't need to have all of them and identifying with one symptom could be enough for it to be possible. Sounds like you might know that but I wanted to make sure because lists of what symptoms are associated with antibodies or neurological autoimmune conditions can be confusing since it's not always clear that you don't need to have all of them.

Here's a couple doctors lists

International autoimmune encephalitis society find a doctor

Autoimmune encephalitis alliance find a doctor
 
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Hi. I haven't yet met the neuroimmunologist so I wouldn't be able to really give my thoughts yet. And since there's very few doctors going around in this field, I'm not sure what reputation they have with their patients compaired to general neurologists. But I do know that the doctor I'll be seeing runs a neuroimmunology lab for the NHS in the UK, and his main speciality seems to be in autoimmune brain conditions, especially AE. Here's a link to the laboratory here:

https://www.nhsggc.org.uk/about-us/...mmunology-and-neuroimmunology/neuroimmunology

I'll head onto the thread you linked. And I'll take note of the autoantibodies associated with my symptoms, though I have very few of symptoms generally mentioned and my case just barely scrapes by with the ones I do have. The fact that my symptoms are mostly localised in my brain/head and almost zero physical complaints is puzzling me. However the blog I mentioned though is on experiences with a rare seronegative form of AE, which did ring alarm bells as this case had an identical onset, symptoms and progression with the same quality of life impacts. Cases like this are struggling to be recognised and the literature seems to just paint this simple black and white picture of AE. Yep, we sure do have a long way to go with knowledge on these autoimmune syndromes of the brain.
 
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The fact that my symptoms are mostly localised in my brain/head and almost zero physical complaints is puzzling me.
Why is that puzzling you. What physical complaints seem to be referred to a lot that you feel like if you don't have them it doesn't make sense? I'm not challenging you, I'm just curious and want to understand.
rare 'degenerative' brain fog
why do you think it is rare. The fact that the mental and emotional decline isn't as dangerous as some of the symptoms listed or is it something about the way it feels that you haven't heard described anywhere? This site for example.
my case just barely scrapes by with the ones I do have.
why do you think it barely scrapes by. As far as I could tell, sudden severe cognitive and emotional symptoms during a flu like period that that continued to get worse and alter your whole life and much of your functioning, and head pain or inflammation feelings, are all consistent with autoimmune encephalitis and should be very much enough clinically speaking. I don't think you just scrape by but because the most dangerous symptoms are the ones most well established as being due to autoimmune brain inflammation, in practice doctors may be ignorant to everything but specific symptoms like seizures. But according to descriptions I've read sudden and severe mental and emotional decline of any kind of are included. What are your other symptoms?

The question is does medicine have the ability right now to test for the antibodies you might have. Or are they not discovered yet. Check what hoosiergirrl posted on that thread about what the mayo doctor says about the rate at which more are being found and investigated. Because you don't have the most dangerous symptoms, even though he's an experienced doctor treating it, you may have to put the pieces together for him. Arming yourself ahead of time with some tools to advocate for yourself is something you can do to protect this chance for yourself and not leave it up to whether he happens to give you the investigation you need and be open to a clinical diagnosis if no antibodies are found.

I have a couple things to suggest for you. Hope they're helpful.
One is to tell him that an autoimmune encephalitis doctor from mayo is encouraging people to encourage their doctors to consult with mayo labs for the latest antibodies being discovered and for information on currently available antibodies so that they can help them make clinical diagnoses for their patients who fit the description but have antibodies you can't test yet. Give him the doctor's name and contact info. Hearing from a respected pioneering institution like mayo and appealing to his desire to help his patients could be a great help.
Two is to bring in the description of the bloggers seronegative case that's so similar to yours. Was she diagnosed and helped? That's the key part.
Three is I suggest walking in not thinking of your case as mild. It's really severe and just because it's not immediately dangerous doesn't mean it's not severe. Sounds like you know that, but forget about whatever is written about more dangerous forms of one disease, just talk about your illness with the gravity it deserves, if you can. That'll help your doctor understand it's severity too.