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:
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.
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: