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 "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. [The author] 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.
 
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Regarding the physical complaints, I don't appear to have any body fatigue or pains in any muscles, joints etc, wouldn't say that I feel physically tired or exhausted during the day or get any temporary flair-ups (PEM) of physical symptoms. I do in fact have some physical complaints however, like general weakness, short lived weakness/breathlessness after (very little) exertion and clumsiness/motor skill issues which are also worsening, although I wouldn't consider myself disabled with these, unlike the cognitive issues. I guess this isn't so much puzzling, but tells me that this is certainly not your general case of post-viral fatigue-related illness and something else. Generally, almost no people that I've stumbled across online of have their life impacted the way it is almost exclusively because of brain fog and head symptoms. There is a tiny handful of people on forums I've came across over the years however who are suffering like this and have nothing towards a diagnosis of any kind.

Since there's such a wide spectrum of brain fog affecting many different cognitive domains and the meaning of the term gets lost, perhaps my particular kind with possible autoimmune causes isn't quite as rare as I once thought. But for years, most of what I heard about brain fog online on was temporary episodes of this, which could be aleviated somewhat with diet, suppliments etc, as opposed to seemingly permanent continuous degradation like in my case. And more severe complaints I generally heard of with the brain fog being permanent and worsening were related to complications with drugs like antidepressents. Then there's the anhedonia, where many speak of altered mental states, depersonalisation, emotional numbness etc which I cannot relate to, since my case of that just feels purely like a disease process wasting away my ability to feel emotions as with the other cognitive domains being affected. What I've been experiencing seems to be almost entirely different symptoms altogether, just that "brain fog", "anhedonia", "headaches" etc are the closest terms I can attribute to them. The term "bradyphrenia" (cognitive slowing) actually fits my cognitive issues better than "brain fog", yet it's probably nothing like the symptom in Parkinson's I bet. I never felt anywhere on the same page as others with brain fog and almost thought I was the only one in the planet with these symptoms untill I looked more in depth into autoimmune causes. I have also spoken to a few people with a similar flu-like onset, progression and level of cognitive debilitation who also suspect having AE after ruling out other possibilities.

Yep, I have to agree myself that the onset and progression of symptoms are enough to suspect a case of autoimmune encephalitis, regardless of what doctors may have to say on the matter and putting the established diagnostic criteria aside. At the absolute least, I have some kind of brain inflammation that goes far beyond the low-grade type, and it appears to be progressive, like something is actively inflamming the brain like I said. And while the cognitive issues and inflammation symptoms in my head are by far my chief complaints, I do have a multitude of other symptoms which I'll list here, including the 3 "stages" of the illness:

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1 - Viral (?) / Infectious Onset

June 2016 - Viral / Infectious Symptoms - A sudden onset of possibly viral/infectious symptoms resembling that of a bad cold or mild flu, including a high fever, dizzyness, sweating, shivering and a dry cough. Cleared up within 1 week and no longer an issue.

2 - Progressing Brain / Head Symptoms after Infectious Onset

June 2016 - Sudden Cognitive Deficits and Decline - Sudden onset along with viral symptoms. These cognitive issues closely fit the definition of "bradyphrenia", a term used to describe slowing of thinking and information processing. It mainly affects recall and processing speed, memory isn't so much affected and there's no actual loss of mental faculties. It feels like my brain is having to work increasingly harder to process any thoughts and becomes very easily aggrivated and fatigued (with accompanying head discomfort or pain) when doing any kind of mentally involving tasks even for very short periods of time. Increasingly more aspects of my cogntive functions are being affected the more it worsens, starting with the upmost higher cognitive abilities (e.g. doing difficult college work or exams, computer programming, working in a recording studio), down to the lower ones (e.g. feeling emotions, being able to socialise or have a basic conversation). Noticably worsened and started to impair daily functioning in December 2017 when annhedonia and further cognitive problems set in. Steadily worsening and continuing to decline.

June 2016 - Persistant Feelings of Tiredness - Sudden onset along with viral symptoms and brain fog/cognitive decline. Started off mild, then gradually worsened along with the cognitive problems. Constant, general feelings of tiredness and sluggishness. I wouldn't consider this "fatigue", since it doesn't seem to be related to energy levels and can still do activities for prolonged periods of time without running out of energy or needing to rest. Steadily worsening.

Sep 2016 - Insomnia (Episodes) - Gradual Onset, started off mild before progressing like my other symptoms. Difficult or in some cases completely impossible to fall asleep at night. Can occur at random on certain days but most often happens in week long episodes, which can lead to 4 days or 5 days of complete sleep deprivation. Has since then progressed to chronic/intermittent insomnia as of April 2019.

March 2017 - "Headaches" / Head Pains - Gradual onset. Various pains or discomforts around the entire head, particularly at the skull areas. NOT actual headaches such as migraine, tension or cluster (never experienced these), can't always be described as actual pain and are likely to be of a different cause related to my condition. These discomforts seem to mainly be around the scalp area, directly underneath the skull, and can be descibed as a continuous burning or "nagging" feeling around the cranial areas. Becoming more frequent and worsening.

Sep 2017 - Vision Issues - Gradual Onset. A sense of peripheral vision loss or tunnel vision, most likely due to brain disfunction. I'm generally oblivious to what I'm seeing (or "zone out" visually) unless consciously thinking about what's in my view. No apparent physical problems with eyes and appears to be a processing issue with the brain. Steadily worsening and continuing to decline.

Sep 2017 - Sleep Issues - Gradual onset. Unrefreshing sleep even after 8-10 hours of sleep, some days worse than others. Can often wake up feeling much more tired and "groggy" than usual. This lasts throughout the rest of the day and can only be resolved (may be better or worse) by a night's sleep. Symptoms of this continue to worsen.

3 - Symptoms In Other Parts of Body and Further Progression of Brain Symptoms

Dec 2017 - Supraventricular Tachycardia (SVT) Attacks - Sudden onset and first episode. Can occur at any time on a random basis, but most often when in a relaxed state such as bedtime. Sudden sweating will generally occur as a warning sign first. The heart then quickly beats hard and speeds up to around 140-200 BPM before slowing down and returning to normal.

Feb 2018 - Flat Emotions / Anhedonia - Gradual onset. Ability to process and feel emotions is deteriorating in a similar manner to other cognitive functions, leading to a sense of anhedonia and apathy as it worsens. Not related to depression (never suffered from this) and seems to a further extension of my other worsening cognitive deficits. Steadily worsening and continuing to decline.

Feb 2018 - Further Cognitive Problems - Gradual onset. Further cognitive problems have set in along with the emotional blunting. Imagination and creativity seem to be getting particularly worse and once vivid photographic memory has almost became non-existant. Word finding is also particularly bad and recent memories of events now feel like distant ones. General level of consciousness and awareness feels like it's decreasing slightly the more these sympoms worsen. and Steadily worsening and continuing to decline.

March 2018 – Distended Abdomen - Gradual onset, not noticable at first. Bloating, swelling and possible excess fat accumulating in the abdomen (particularly at the front stomach area). Mild pain and discomfort in this area. Prior to this, stomach area looked perfectly slim and healthy. This doesn't appear to be the result of any changes to my diet and is unaffected by any food or suppliments I take. Still worsening and gradually growing in size as time progresses.

March 2018 - Heart Arrhythmias, PVCs and Bigeminy Episodes - Various Heart arrhythmias which first began suddenly after taking propranolol (a single daily dose). This includes random 'one-off' PVCs, as well as short episodes of bigeminy triggered by exertion. Lasted 2 months, subsided, then returned 3 months later for unexplained reasons.

March 2018 - Chest Pains - Sudden onset along with heart arrhythmias. Strange pains that often appear at random in the chest, mainly on the left side. A dull, radiating pain in the middle area along with chest tightness (basically like a heart attack) can often appear during an SVT attack, likely due to the heart muscles being under too much strain.

March 2018 - Muscle Jerks/Twitches - Gradual onset. Short episodes causing small repetitive muscle jerks that happen on any part of the body. Can also happen in the heart and be mistaken for arrhythmias.

April 2018 - Severe Head Pain when Lying Down - Rapid onset, happened soon after the heart arrhythmias and chest pains. A strange, severe pain which quickly builds up when any kind of pressure is applied to any area of the head where the brain is located, or on the opposite side of the head to where the pressure is. Resting my head on a pillow for example will cause this pain on the opposite side to where the pillow is (and feels like the brain is pressing against the opposite side of the skull). This pain is extremely shorted lived instantly disappears when my head is lifted and pressure is relieved. Wearing items on my head, such as a hat or headphones can also cause this pain. Pressure on my upper spine area (sitting with my back against a chair for example) will cause a dull headache that quickly worsens, then disappears when the pressure is relieved. Allowing this pain to build up too much will cause a excruciating 'stab' of pain (a sharp prickly pain in the center of the affected area), followed by sudden very loud ringing in ears, light dizzyness and a burning sensation that spreads from the affected area downwards. Episodes of this lasting several weeks can happen, accompanied by the later symptoms unpleasent head episodes and further head pains, before subsiding back to it's regular state.

June 2018 - Further Vision Issues - Gradual Onset. Flickery vision with slight static, and flickering shadows (something I would only previously get with sleep depravation). Looking at plain white objects makes this most noticable and tiny, white specks (floaters?) can also be seen.

August 2018 - Tinnitus - Gradual onset. Constant ringing in ears for unexplained reasons, without any exposure to loud sounds. Is noticably worse, with loud ringing coming and going during the unpleasent head episodes and exacerbated symptoms. Aggravating the severe head pain when lying down will cause extremely loud ringing or whistling to come on abruptly.

August 2018 - Unpleasent Head Sensations (Episodes) - Gradual onset. An extremely unpleasent, aggravating feeling in the head that is somewhat comparable to a bad head cold without the physical symptoms. My head generally feels like this all the time to an extent, but exacerbates to a much more severe state during these episodes. All symptoms noticable worsen during these episodes, along with acompanying head pains, drastically impairing daily functioning compaired to current baseline levels. Later episodes of this have been causing noticable (at times, sudden) weakness in muscles and increased difficulty talking. Taking a high dose of codeine seems to help block out the unpleasent feelings with these episodes and make them tolerable. Happens in week long episodes generally twice each month.

August 2018 - Further Head Pains (Episodes) - More severe head pains which occur during the unpleasant head episodes, then subside once the episodes end. These include burning and stinging pains around the brain areas (which I refer to as "battery acid brain", due to it feeling like hot acid burning the brain), boring head pains and noticable feelings of increased pressure in the head (feels like the brain is swelling up and pressing against the skull).

March 2019 - Exertional Breathlessness - Getting out of breath very easily, with accompanying heart palpitations, when doing any kind of physical activity for short periods of time. This can include climbing stairs, vacuuming or lifting fairly heavy objects. There symptoms are short lived and subside quickly within minutes after the activity is over. Steadily worsening.

Apr 2019 - Insomnia (Chronic/Intermittent) - The insomnia seems to have progressed to a more chronic and intermittent state where it comes and goes on a random basis. In some cases, it may alternate from one day to the next. Unpleasent head sensations can often acompany this type of insomnia, making sleeping very uncomfortable and difficult. Has since then progressed to severe insomnia episodes as of December 2019.

July 2019 - Brief Loss of Balance - A sudden, brief loss of balance which can occur at random for no apparent reason. This is possibly related to increased weakness in leg muscles and motor skill issues starting to set in. Happens occasionally, generally once per week at present, but seems to be becoming more frequent.

July 2019 - Problems with Motor Skills - Increasing problems with motor skills, leading to noticable weakness, clumsiness and poor coordination, especially with hands. Writing with a pen or trying to hold a camera steady for example is becoming increasingly more difficult because of this. Steadily worsening.

Oct 2019 - Rapid Weight Loss and Muscle Waste - Rapid onset. Progressive fat loss and possible muscle waste all over the body, despite getting all the correct nutrition and no changes in diet. Legs especially are becoming worryingly thinner, with the knee bones, ligaments and tendons noticably protruding out of them. This weight loss excludes the abdomen which remains heavily bloated and distended. Steadily worsening.

Dec 2019 - Severe Insomnia Episodes - Episodes where the insomnia isn't just intermittent in regards to staying asleep, but falling asleep as well. This can happen in prolonged episodes and often results in a fragmented 3-5 hours of sleep each night, with roughly just 1 hour of sleep at a time before waking up and falling back asleep.

Nov 2020 - New Symptoms during Head Episodes - During an unpleasent head episode and exacerbation of symptoms, some noticable new symptoms have appeared. This include sudden weakness in arms and a stiff neck that comes and goes abruptly, with accompanying pains at the back of the head. Likely becoming worse with each episode.

Jan 2021 - Head Pain when Coughing and Straining - During more recent unpleasent head episodes and exacerbations of symptoms, actions such as coughing and swallowing can cause sudden, short lived pains in my head. This is a dull pain felt in the middle of the head. Using the toilet (defecating) is particularly painful with this symptom.

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As you can see, it was mostly just brain fog and "headaches" at the start, but has since then led to a big list of more severe symptoms of brain inflammation over the years, including physical ones. Doctors just glance at this list of symptoms and run for the hills, thinking that it's some complex multi-system illness full of endless "unexplained" symptoms that they can't diagnose. And while the problem isn't exactly a simple one, it seems a lot more straightforward, my brain is struggling and wearing down under the effects of continuous, prolonged brain inflammation. And whatever is causing this needed to be address and stopped.

I could well have at least one of the antibodies they can test for I expect, though there's also a good chance my case of it is seronegative. If this is the case, an EEG and PET scan would most likely validate the symptoms from what I hear.

I'll look more into the Mayo doctor you mentioned and let the neurologist I'm seeing know about this. And I will be mentioning the blog to the doctor I'm seeing, since it's basically identical to mine. Yep, she was in fact diagnosed and recovered after treatment. Here's a link to her blog if you want a read:

http://wherearemypillows.com/?cat=65
 
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Wow your neurological symptoms are extensive. I am really hopeful that you'll find autoimmune causes. I looked at the clinic. Sounds good but I wonder how many other antibodies they have besides the ones routinely tested for that they list. What you could do is show them a list from the ones on that thread and see if they test for all of them so you don't miss anything. With the muscle twitches I would want to be tested for vgkc in addition to lg1 and caspr2. I have vgkc without lg1 and caspr2. But I have not tested my csf yet

Definitely don't call it mild ae! Your memory's going, you can't feel things strongly anymore, your head and spine burns, your muscles are twitching, vision problems, you're losing your motor coordination. I mean. I think not thinking of it as brain fog anymore could be a good transition. When I can match my symptoms to concerning neurological symptoms and name them that way to myself and others, it helps. Reminder to myself to keep doing that and not even using brain fog most of the time. Me personally. For example disorientation and inability to think or understand things in a moment, or reduced ability in general, are better words I think. You did an awesome job of describing them that way on your list.

Your catalogue of symptoms was awesome and is exactly what's gunna be most useful for evaluating autoimmune encephalitis. I mean I know you have had doctors hear them and run, but I think that list will help you a lot for when you get evaluated for autoimmune encephalitis. Also I think that maybe it might be useful to call it encephalopathy just to start, when you talk about it, so that an ignorant doctor doesn't go "oh there's no abnormal scans so you can't have autoimmune encephalitis". That is not true and is not best practice. At least in the way these terms are considered. Just a thought. I find them confusing and that there's not consistent standards on when encephalopathy is used and when encephalitis. There's a doctor at oxford who is one of the core authors of the best practices proposal from the AE Alliance. I think he could be a resource in the uk for your doctor to consult with if necessary. Sarosh Irani.
perhaps my particular kind with possible autoimmune causes isn't quite as rare as I once thought.
I believe you're right. All these cognitive dysfunctions you've mentioned are common for both ME and neurological disorders. Like AE, but others too.
But for years, most of what I heard about brain fog online on was temporary episodes of this, which could be aleviated somewhat with diet, suppliments etc, as opposed to seemingly permanent continuous degradation like in my case.
Oh gosh no. All kinds of cognitive and emotional symptoms and experiences that last all the time are normal. People who have ME I mean. Fluctuations are normal but so are consistent symptoms. And you have fluctuations too with head pressure and insomnia. I forget what else.

And relieved with supplement and diet, well that's only for those fortunate enough to have found those helpful. The limited amount of people diagnosed, and the limited amount of those looking for ways to help on the internet, have some percentage of people who are helped by supplements and diet. But it's really not a big percentage and the improvements are usually not big most of the time, is the impression I get. My ME doctor I've just started seeing, sees a lot of ME patients and at least for pem says many supplements don't do much for most people for that. That's different than talking about brain fog but I think the same is true. We just don't have widespread access to reliably helpful things that help or treatments.

Weakness, and weakness after exertion,would fit with ME I believe without fatigue. Maybe it's an issue of definition and I'm not sure what the clinician coalition for ME would say about that for example. I mean post infectious more weakness after exertion, in addition to continuous weakness and cognitive dysfunction and sleep impairment, are hallmarks of ME. ME is just a group of symptoms without a cause, so whatever your causes are, you have ME clinically I would say. I'll show you my symptom onsets too.
If this is the case, an EEG and PET scan would most likely validate the symptoms from what I hear.
Plenty of people with AE don't have abnormal scans or cerebrospinal fluid. I want to make a thread for autoimmune encephalopathy and encephalitis to learn just about that, but in the meantime I'll send you what I've compiled.
 
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From her blog

"they don’t reach the same depth or texture they used to; and at times they feel a bit… mechanical. Like I have to rely on learned, canned responses at times; or I can only muster replies to things in a very literal way rather than with my own sense of style. The bulk of my wit and sense of humour are still buried somewhere I have yet to unearth."

These were so true for me. I should say these were very strong for me, and are getting better, much better, but still aspects of them woven throughout my existence. Fluctuates too. The mechanical thing was the case strongly for so long. There's a lot of things on her blog that are ringing true for me. It's nice to have this thank you
 
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@wherearemypillows we seem to be talking about you here!!!
Hey, thanks for bringing this to my attention! I'm glad my blog has been of help, but I'm sorry you two are dealing with these symptoms in the first place. Keep on the fight though - it's extremely draining and exhausting to find answers and treatments, but it's completely possible to find relief even years later (as you may have seen, it took me 5 years to get my seronegative AE diagnosis and I recovered fully within half a year, though I have had some struggles since due to inconsistent ongoing maintenance treatment).

Re: @SeanQHX1, I really hope you're able to make some headway with the neuroimmunologist appt you have soon. If I were in your shoes I'd definitely advocate hard for a full AE workup including lumbar puncture, EEG, and PET if possible. If you end up having to look into other avenues, I know Sarosh Irani's group in Oxford has a wonderful reputation. His group just published a paper that provides insight into how they view the illness here. Also the Encephalitis Society in the UK has supportive staff that have been nice to talk to and may have some better insight into how to navigate the system over there.

Good luck to both of you!
 

junkcrap50

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"they don’t reach the same depth or texture they used to; and at times they feel a bit… mechanical. Like I have to rely on learned, canned responses at times; or I can only muster replies to things in a very literal way rather than with my own sense of style. The bulk of my wit and sense of humour are still buried somewhere I have yet to unearth."
Wow. That perfectly described me, most especially in the couple years after a point when my ME significanlty worsened. This brain fog, in ability to think, and loss of personality was practically my only complaint then.

@wherearemypillows we seem to be talking about you here!!!
@wherearemypillows . I've found your blog from a post here. Great blog and great work. Very prolific. Do you have a blog post about your autoimmune encephalytis origin story? When you thought to test for it or diagnosed with it? I thought I found it here (https://wherearemypillows.com/?p=1109) as that was the earliest post with the AE tag, but you reference in "The Canadian doctor who first treated my AE". I guess I will flip through all your pages and skim every post.
 
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Wow. That perfectly described me, most especially in the couple years after a point when my ME significanlty worsened. This brain fog, in ability to think, and loss of personality
It's nice to find others who have experienced what I have. I had little context for it for a long time. Even when I had more context, it's different than having a well defined process that's shared by others you can talk to. It definitely helps to be in touch with an ME forum and ME organizations, but some of the cognitive and emotional losses of function I've had would be reflected more commonly in autoimmune encephalitis support forums and groups, which @wherearemypillows posted so many of on her blog. It's a really nice opening to become aware of how nice that could be for me.

For a long time, since 8 years ago but also like you @junkcrap50, especially after a worsening for me 2 years after that, so often I was trying to figure out how to be a person. What is a person supposed to do, to think, to feel? I still am, but it's much much less overall, and fluctuates. I feel more like I am a person, more often. Things seem less foreign. I'm more grounded. The thought of treatment that may restore so much of cognitive and emotional functions is overwhelmingly good. What about you @junkcrap50 ? And @SeanQHX1
 
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@PisForPerseverance Yep, it does look like an extensive list of symptoms, though most of them I would say are just further expansions to other issues that began previously. Keep in mind too that it was mostly just the initial cognitive problems for nearly a year before the other symptoms eventually began to set in. Perhaps putting these symptoms into a tree diagram and grouping the symptoms, rather than just a list, would perhaps put this better into perspective and make this easier for doctors to understand.

The term "brain fog" doesn't really fit in my case I do have to say, especially given than the term "fog" suggests something temporary than can lift, rather than a long-term situation that only gets worse with no let up. And this term doesn't say anything about these agonizing pain aspects to trying to think either (where I picture my brain as a weak, inflammed muscle straining itself and using all of the strength it has left to operate). Brain fog is really just a generic term people use for any kind of cognitive disfunction but can mean anything from forgetting something once in a while to barely being able to function due to complete cognitive debilitation. It covers such a wide spectrum that you almost never seem to be on the same page as others who's say they suffer from it.

I agree, what I have certainly isn't mild, just that it's not immediadely dangerous or life threatening, and is more at the high-functioning end of the spectrum. It's still severe enough to have impacted my life the way it has, with every second of my existence spent with these brain symptoms more or less punching me in the face continuously. Even the time it's taking just now to type this reply is a good example. If anything affects your daily functioning like this, then it's definitely not mild. This is the best way I could put many of these symptoms into words anyway with the list I made, though as I said, they are difficult to describe and not what most people would assume initially when you mention symptoms of the same name. I can't stress this point enough to doctors especially, who I've previously had ignorantly dismiss my symptoms under the impression that they're more common ones (assuming the inflammation pains/feelings in my head are migraines for example).

I do know than cognitive problems / inflammation symptoms as severe as mine are common too with ME. I'd still say that they generally fluctuate a lot more with ME though and doesn't seem to be progressive from what I hear from others with it. Although I have heard some say that their relapses get worse each time they have one. The fluctuations too caused by PEM are far more extreme than anything I've experienced, the fluctuations I get are rather mild (or at least, don't tip the scale too much) and don't really cause any further disability, just make me feel subjectively more worse or more "horrible". The actual mental impairments I'm getting though just gradually progress independent to everything else, almost like something degenerative. The weakness/breathlessness after exertion is short lived and catch my breath again quickly afterwards, This might be an ME symptom too, though tons of conditions can cause this like iron deficiency, heart issues, COPD etc.

Nothing will show up on a regular CT or MRI scan I'm sure, but I'm still convinced that an EEG and PET scan will help me case with this. The antibodies I may have causing my symtoms could be well undetectable, but I reckon that evidence of brain inflammation and hypometabolism will be found with those tests/scans.

Yep, I really do hope that the treatment I may need for this does restore my cognitive and emotional functions back, after all, the thought of getting out of this mental limbo is what's keeping me going. A human's most basic instinct and emotional drive after all is to obtain pleasure and enjoyment (not survival like evolutionists will say, wanting to survive is simply a bi-product of looking to obtain further pleasure). When our ability to experience enjoyment is taken away from us or destroyed, then naturally we either want to end that existance (suicide), or fight to get it back.

@wherearemypillows No one should have to go through what you did. And I know myself how exhausting, strenuous and painful it is, having to constantly fight through these horrible brain symptoms just to function, let alone to find answers and get the treatment you needed all along. After going through all that for 5 years, battling both the illness and the medical system to find answers and treatment, I'm glad to hear you managed to pick up the pieces and were finally able to live the life a young person like yourself should, even if it is still a bumpy and sometimes dangerous road ahead at times.

What's been happening to me almost seems like history repeating itself after reading your blog. 5 years spent frustrated trying to figure out how a flu illness could cause worsening cognitive debilitation like this and symptoms I thought I were unique only to me at the time.

I do my best to get a full AE workup. After all, not having any of the established, more dangerous symptoms doesn't rule out the possibility of having detectable autoantibodies. And will be advocating especially to get an EEG and PET scan. Going by how far gone I am now with these brain symptoms, I expect there will be clear signs of brain inflammation at the very least showing up on them. I'll definitelly look more into Saroshi Irani's group too. Once again, thanks for the kind words and support.
 
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Aidan Walsh

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Is the blood test panel antibodies for AE acceptable by the NHS in the UK? Where can I run the sample blood for AE privately Please?
 
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Wow. That perfectly described me, most especially in the couple years after a point when my ME significanlty worsened. This brain fog, in ability to think, and loss of personality was practically my only complaint then.


@wherearemypillows . I've found your blog from a post here. Great blog and great work. Very prolific. Do you have a blog post about your autoimmune encephalytis origin story? When you thought to test for it or diagnosed with it? I thought I found it here (https://wherearemypillows.com/?p=1109) as that was the earliest post with the AE tag, but you reference in "The Canadian doctor who first treated my AE". I guess I will flip through all your pages and skim every post.
Glad you've found my blog of interest! I spent long gruelling years (not as long as some in this forum though) without concrete answers and so being able to share what I've now learned with others is the primary motivator for getting my story out there, in the hopes that it leads to medical help that improves their quality of life. I'm currently riding some ups and downs and in a place where I need to ration my spoons though, so I haven't gotten around to writing things up as quickly as I would like.

There's no one post that addresses this, but the answers are scattered around in various entries. Back this February when I was feeling quite well, I did a short podcast series, and this episode here touches on diagnosis:
https://anchor.fm/wherearemypillows/episodes/S1E13-My-FIVE-year-diagnostic-journey-eqc9l6

A very abbreviated version:
  • sick in 2014 after a flu-like illness left me with memory issues --> (inaccurate) depression diagnosis
  • 2018ish: one doc had me do the Cunningham panel, which made him consider the PANS diagnosis (which is now being called basal ganglia encephalitis) but I experienced no symptomatic help from antibiotics
  • continued cognitive worsening through the years
  • 2019: acute exacerbation of cognitive symptoms, admitted to the hospital with catatonia, received a full AE workup for the first time. It was the PET that really showed metabolism consistent with AE. That's when I got the seronegative AE diagnosis, which explains everything I've gone through far better than the other hazy labels some docs have thrown around in my case.
 
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It's nice to find others who have experienced what I have. I had little context for it for a long time. Even when I had more context, it's different than having a well defined process that's shared by others you can talk to. It definitely helps to be in touch with an ME forum and ME organizations, but some of the cognitive and emotional losses of function I've had would be reflected more commonly in autoimmune encephalitis support forums and groups, which @wherearemypillows posted so many of on her blog. It's a really nice opening to become aware of how nice that could be for me.

For a long time, since 8 years ago but also like you @junkcrap50, especially after a worsening for me 2 years after that, so often I was trying to figure out how to be a person. What is a person supposed to do, to think, to feel? I still am, but it's much much less overall, and fluctuates. I feel more like I am a person, more often. Things seem less foreign. I'm more grounded. The thought of treatment that may restore so much of cognitive and emotional functions is overwhelmingly good. What about you @junkcrap50 ? And @SeanQHX1
1000%, as @PisForPerseverance has highlighted here, joining in on conversation in patient groups is really where it's at if you don't fit the most classic presentation of AE and you don't have an incredible doc that truly gets how to treat the illness appropriately (a combination that most sadly don't fit into). The lived experience of AE can be a lot different than the impression you're left with if you only read the medical journals, and the groups give you a vivid sense of that. All the AE groups I've found online are here: http://wherearemypillows.com/?p=1214
 
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The term "brain fog" doesn't really fit in my case I do have to say, especially given than the term "fog" suggests something temporary than can lift, rather than a long-term situation that only gets worse with no let up. And this term doesn't say anything about these agonizing pain aspects to trying to think either (where I picture my brain as a weak, inflammed muscle straining itself and using all of the strength it has left to operate). Brain fog is really just a generic term people use for any kind of cognitive disfunction but can mean anything from forgetting something once in a while to barely being able to function due to complete cognitive debilitation. It covers such a wide spectrum that you almost never seem to be on the same page as others who's say they suffer from it.
That's a very apt analogy, with the brain like a weak, inflamed muscle. You can try to squeeze your brain to push harder but there is a hard limit to the work it can do, a much lower limit than what it should be capable of.

As @SeanQHX1 points out here, "brain fog" isn't the most useful term because it can mean wildly different things to different people. Docs especially don't seem to take it seriously - so if possible, I'd advise avoiding the term in medical appointments and trying to characterize more specifically what area of cognition is problematic with examples and % e.g here's a random example. "My ability to verbalize thoughts feels impaired by 80%, a blog that would regularly take me 3 hours to write now takes 15 hours"

I agree, what I have certainly isn't mild, just that it's not immediadely dangerous or life threatening, and is more at the high-functioning end of the spectrum. It's still severe enough to have impacted my life the way it has, with every second of my existence spent with these brain symptoms more or less punching me in the face continuously. Even the time it's taking just now to type this reply is a good example. If anything affects your daily functioning like this, then it's definitely not mild. This is the best way I could put many of these symptoms into words anyway with the list I made, though as I said, they are difficult to describe and not what most people would assume initially when you mention symptoms of the same name. I can't stress this point enough to doctors especially, who I've previously had ignorantly dismiss my symptoms under the impression that they're more common ones (assuming the inflammation pains/feelings in my head are migraines for example).
Yep cognitive decline can be massively debilitating, as I know very well. As @SeanQHX1 touches on though, to a doctor in the AE world, if cognitive impairment is kind of your only symptom, then they will consider your issues "mild." IMO most docs will probably be more receptive to helping you if you are able to acknowledge where the similarities and differences are between your case and what's "classic," be less defensive, and be more inclined to lay off the idea "oh this patient is just trying to shoehorn their way into the wrong diagnosis." And as @PisForPerseverance pointed out somewhere else, "encephalopathy" is probably a safer term to use in an appointment if you are exploring encephalitis but it has not been diagnosed

My own docs won't call it this but I have noticed some groups are starting to use syndromic labels as a means to classify autoimmune encephalitis (vs. antibody labels), I think autoimmune dementia most accurately describes what I've gone through, here's one review:
https://journals.sagepub.com/doi/10.1177/1756286421998906?linkId=114191714

I do know than cognitive problems / inflammation symptoms as severe as mine are common too with ME. I'd still say that they generally fluctuate a lot more with ME though and doesn't seem to be progressive from what I hear from others with it. Although I have heard some say that their relapses get worse each time they have one. The fluctuations too caused by PEM are far more extreme than anything I've experienced, the fluctuations I get are rather mild (or at least, don't tip the scale too much) and don't really cause any further disability, just make me feel subjectively more worse or more "horrible". The actual mental impairments I'm getting though just gradually progress independent to everything else, almost like something degenerative. The weakness/breathlessness after exertion is short lived and catch my breath again quickly afterwards, This might be an ME symptom too, though tons of conditions can cause this like iron deficiency, heart issues, COPD etc.
I was in a similar place early on in my journey, when MECFS came up but it didn't quite feel right as a diagnosis - I never had PEM early on, just MAYBE a little bit in the late stages. Also I felt like the cognitive complaints I had were significantly worse than the average I perceived from reading MECFS patients talk about their experiences (I do realize there's quite a spectrum though).

Yep, I really do hope that the treatment I may need for this does restore my cognitive and emotional functions back, after all, the thought of getting out of this mental limbo is what's keeping me going. A human's most basic instinct and emotional drive after all is to obtain pleasure and enjoyment (not survival like evolutionists will say, wanting to survive is simply a bi-product of looking to obtain further pleasure). When our ability to experience enjoyment is taken away from us or destroyed, then naturally we either want to end that existance (suicide), or fight to get it back.

@wherearemypillows No one should have to go through what you did. And I know myself how exhausting, strenuous and painful it is, having to constantly fight through these horrible brain symptoms just to function, let alone to find answers and get the treatment you needed all along. After going through all that for 5 years, battling both the illness and the medical system to find answers and treatment, I'm glad to hear you managed to pick up the pieces and were finally able to live the life a young person like yourself should, even if it is still a bumpy and sometimes dangerous road ahead at times.

What's been happening to me almost seems like history repeating itself after reading your blog. 5 years spent frustrated trying to figure out how a flu illness could cause worsening cognitive debilitation like this and symptoms I thought I were unique only to me at the time.

I do my best to get a full AE workup. After all, not having any of the established, more dangerous symptoms doesn't rule out the possibility of having detectable autoantibodies. And will be advocating especially to get an EEG and PET scan. Going by how far gone I am now with these brain symptoms, I expect there will be clear signs of brain inflammation at the very least showing up on them. I'll definitelly look more into Saroshi Irani's group too. Once again, thanks for the kind words and support.
I would say the same thing about what keeps me going—it's the belief in the future; that it really truly can be better. I've had two HUGE turnarounds after immunotherapies, even while receiving them 5 and 6 years after symptom onset - so real, genuine healing is certainly possible no matter how impossible it may seem like at times. @SeanQHX1 The overlap between my story and yours is very very large and so I am very hopeful for you that you will also enjoy a similar outcome. Just as a headsup, from what little I've heard from UK patients, the PET specifically will probably be difficult to get ordered, and may need to be privately done.

Keep going one foot in front of the other :)
 
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live the life a young person like yourself should, even if it is still a bumpy and sometimes dangerous road ahead at times.
I'm just a few years older than you both, and got sick right when I turned 24 (but got probably autoimmune pans at 17), so I know what it's like to miss out on years of our twenties. :(. May we all become healthy enough to able to pick up our pieces of what's happened and build a life of ease and enjoyment.
Perhaps putting these symptoms into a tree diagram and grouping the symptoms, rather than just a list, would perhaps put this better into perspective an
I think it was very easy to understand the progression.
not what most people would assume initially when you mention symptoms of the same name. I can't stress this point enough to doctors especially, who I've previously had ignorantly dismiss my symptoms under the impression that they're more common ones (assuming the inflammation pains/feelings in my head are migraines for example).
Very frustrating.