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A Rare Seronegative Case of Autoimmune Encephalitis?

brain fog worsening progressive autoimmune encephalitis seronegative anhedonia inflammation diagnosis treatment

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#1 SeanQHX1

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Posted 11 June 2021 - 09:53 AM


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/anhedonia 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 a blog, which has resonated a lot with me, especially the posts on brain fog, and has given me more reason to suspect autoimmune causes. It 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 and treatment. 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!


Edited by Daniel Cooper, 23 June 2021 - 05:19 PM.


#2 sheepdog_lord

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Posted 01 November 2022 - 06:19 PM

any updates regarding this? hope you're doing well, op



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#3 SeanQHX1

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Posted 04 November 2022 - 08:33 PM

any updates regarding this? hope you're doing well, op

 

Thanks. I can't say I'm doing well unfortunately however and I've deteriorated even further since I made this post.

 

I managed to get one further investigation, an MRI scan which was normal (as expected). Besides that, none of the doctors I've seen will entertain this potential diagnosis and have just been writing me off with wastebasket diagnoses (FND and ME/CFS/post-viral fatigue) that don't remotely fit my symptoms at all and fail the criteria. Hopefully I manage to get some answers and treatment while I still can.
 


Edited by SeanQHX1, 04 November 2022 - 08:34 PM.






Also tagged with one or more of these keywords: brain fog, worsening, progressive, autoimmune, encephalitis, seronegative, anhedonia, inflammation, diagnosis, treatment

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