I dont think i have CFS anymore.

Wanja

Wanja

Senior Member
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111
Location
Berlin, Germany
I was diagnosed in 2016 with CFS, after i had severe fatigue and derealisation (feeling like everything is delayed in my brain, more like low frames per second) after a yellow fever shot in the end of 2015. The derealisation started occasionally month before only after drinking when i was hungover and post nasal drip when i smoked cigarettes. I was sick quite often in these times. I had a crash then in march 2016 where it started with Diarrhea for month, dizzyness, weakness, a burning sensation in my stomach and guts after eating and strong derealisation etc. I had no real PEM tho, i was weak but i was able to do stuff without getting worse.

I got 1000 doctors checking me and and the only thing they found was schistosomiasis antibodys so i got diflucan and another heavy antiparasitic drug.
After that i went into remission for years.
Derealisation never went away tho.
I did weightlifting, 40 hours work per week etc and i felt that it was exhausting but i never crashed.
I always felt the worst after waking up as i was always really numb and dizzy and weak.
And most of the time my right leg was weak as my knee just gave away while walking so i kind of limped all the time.
Sometimes i had severe tiredness in the afternoon for about an hour where it was almost impossible for me to stay awake, it was really weird, i felt asleep while sitting at work.
Also i had chronic sinusitis and post nasal drio all the time + really weird spots on my tongue and white thrush (possibly candida).
Now i crashed again 6 weeks ago and it started with the burning sensation after eating again and with severe "fever" like waves, burning in my head, impared thinking and felt like i have a severe flu.
I got weaker and weaker and it all changed into neurological smyptoms.
I cant think clearly anymore, my memory is impaired, i have headaches everywhere and sometimes focused in my brainstem.
I have severe spasticity in my legs, wasnt able to walk anymore for 2 weeks now. The Derealisation is INSANE. i only get single pictures of my surroundings like my brain cant process whats going on.
Everytime i closed my eyes my body set myself in a weird state, it is like a blindness in my head, no orientation and it immediatly shuts down so i get tingling in body, like a zap down my spine. Like its in a weird state between awake and sleeping.

I woke up at night and couldnt speak or think, my brain And everything was tingling and i felt a horrible "feeling" in my body, it felt like death.
I can walk again now and have more strength but my mind is the same. I do housebound stuff atm, but mostly in bed allday, but have no PEM.
It feels lime a part of my brain died weeks ago.

What is going on? I think i could go for a walk now and wouldnt crash. I am just really weak. Maybe its not cfs.

Do you guys have an idea?
 
Last edited:
Martin aka paused||M.E.

Martin aka paused||M.E.

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2,291
Did you take antibiotics or other drugs than the listed above?
When I was mild I crashed only when I overdid things heavily... Like partying or my state exam
 
W

Wishful

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To me it doesn't sound like ME. I think your doctor just found 'CFS' to be a convenient diagnosis that allowed him to avoid further hassle.

As for what it is, no idea. The brain is amazingly complex, so all sorts of things can go wrong. Have you been to a good neurologist and had some brain scans done?
 
Wanja

Wanja

Senior Member
Messages
111
Location
Berlin, Germany
Wishful said:
To me it doesn't sound like ME. I think your doctor just found 'CFS' to be a convenient diagnosis that allowed him to avoid further hassle.

As for what it is, no idea. The brain is amazingly complex, so all sorts of things can go wrong. Have you been to a good neurologist and had some brain scans done?
Click to expand...

I had an MRI 5 years ago... Not much more.
I didnt have these devastating neurological symptoms back then tho.
What tests should i get?
 
W

Wishful

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Wanja said:
What tests should i get?
Click to expand...

I'm no expert in that area. If I was in that situation, I'd ask a neurologist. They'd be the ones who know what's available and what they can--or can't--reveal.

If you're experiencing delayed cognition, perhaps an EEG would reveal it. Flash an image to trigger decision-making, and see how long it takes for the neural network to fire your button-pressing muscles? Actually, that could be done without an EEG. If you know someone who can write a program, that should be a simple task. I seem to recall on online test for reflexes or some such thing, where you click after something flashes on the screen. Check your response time vs a healthy control. If it's dramatically slower, that would give the neurologist a starting point.
 
Wanja

Wanja

Senior Member
Messages
111
Location
Berlin, Germany
Wishful said:
I'm no expert in that area. If I was in that situation, I'd ask a neurologist. They'd be the ones who know what's available and what they can--or can't--reveal.

If you're experiencing delayed cognition, perhaps an EEG would reveal it. Flash an image to trigger decision-making, and see how long it takes for the neural network to fire your button-pressing muscles? Actually, that could be done without an EEG. If you know someone who can write a program, that should be a simple task. I seem to recall on online test for reflexes or some such thing, where you click after something flashes on the screen. Check your response time vs a healthy control. If it's dramatically slower, that would give the neurologist a starting point.
Click to expand...

Thats a great idea. I wish there where any appointments available or doctors that take me seriously... I will get an EEG as soon as possible.
 
Diwi9

Diwi9

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@Wanja - You need diagnostics performed. I would be concerned about potential environmental exposures, or traumatic injuries that only imaging can reveal. I am sorry you are experiencing these horrible symptoms. I have experienced derealization a few times with ME and it was during my worst state, but temporary. It was awful and I cannot imagine dealing with this on a regular basis. I don't know what country you are in, but I hope you have access to good health services and coverage.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

Senior Member
Messages
2,291
Diwi9 said:
@Wanja - You need diagnostics performed. I would be concerned about potential environmental exposures, or traumatic injuries that only imaging can reveal. I am sorry you are experiencing these horrible symptoms. I have experienced derealization a few times with ME and it was during my worst state, but temporary. It was awful and I cannot imagine dealing with this on a regular basis. I don't know what country you are in, but I hope you have access to good health services and coverage.
Click to expand...
He already said that 1000 doctors checked him... @Wanja would be helpful if you told us which tests have been done so far, especially in neurology
 
godlovesatrier

godlovesatrier

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2,616
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United Kingdom
I was thinking auto immune Encephalitis while reading your post purely because the neurological aspects seem to be so aggressive.

Whereas for me it's always been the other way round. The physiological symptoms are the worst.

Hope you figure it out.
 
P

PisForPerseverance

Senior Member
Messages
253
Hey wanjja. I feel for you and so sorry. Derealization is horrible, when I first got sick it was the strongest. Actually it may not have been the strongest, it got stronger again a couple years later and different derealization experiences would come and go. But there were unique things about first getting sick which was very sudden. Neurological symptoms that were at their worst, and its own unique scariness because it was the first time they were happening and I did not know I was safe and that they were symptoms. At least you somewhat know they are symptoms and that you are safe to some degree, it sounds like? Thank goodness because that orientation to reality and to that they are medical symptoms is enormously helpful. Do you sometimes feel like you don't know who you are and where you are?

I don't have the worst derealization anymore and when I do it comes and goes sometimes when I am having disorientation of some sort with cognition changes I experience regularely. I got sick 8 years ago and my cognition started slowly improving in 2018. Now very much better even though I dip into various cognitive changes and brain fog.

Anyway I did some treatment that made that recovery of some symptoms happen but it was not autoimmune treatment. Now that I've found some of the sources of autoimmune encephalitis and other autoimmunities, I can treat them.

Your symptoms match well with autoimmune encephalitis and/or other autoimmune neurological disorders from what I've been learning. That you are deteriorating so rapidly is a good autoimmune indication from what I'm learning and it's really important you get your blood and csf tested for numerous antibodies and I hope very much that you are given that correct medical attention. Know that some autoimmune disorders like autoimmune encephalitis can progress to coma and death and that's not always the case at all at all, I never was in a coma! There's many manifestations and levels of how dangerous it gets. But. What you're going through and describe does need immediate medical attention.

Autoimmune neurological disorders can be gradual, there's many disorders, and autoimmune encephalitis can be gradual too from what I understand. Especially the getting worse. It would fit potentially that you had an autoimmune, or infectious, or post infectious neurological autoimmune process from the time you first got derealization. And that that same process, with maybe others added, got worse.

What I'm learning is that it's not unlikely to have more than one antibody that's affecting neurology. Could have several autoimmune processes. I mean, I do have, and that's what I'm seeing in research. Sometimes they call them "complexes" of antibodies. My ME doctor said many of their patients find several autoimmunities. Not necessarily all neurological ones though.

Recent thread where I talk about my recent experience with autoimmune encephalitis. https://forums.phoenixrising.me/threads/what-are-symptoms-of-autoimmune-encephalitis.84284/ And what tests I used and what other tests I suggested to them based on their symptoms and the typical diagnosis process like the cerebrospinal fluid testing. The suggestion to bring studies into your doctor I say to you too... Is it possible that you can do that? Whatever I'm researching on autoimmune neurological antibodies, I'm happy to share the study links and excerpts I'm compiling.
 
Wanja

Wanja

Senior Member
Messages
111
Location
Berlin, Germany
crypt0cu1t said:
Derealization is my worst symptom and I was diagnosed with Autoimmune Encephalitis
Click to expand...
PisForPerseverance said:
Hey wanjja. I feel for you and so sorry. Derealization is horrible, when I first got sick it was the strongest. Actually it may not have been the strongest, it got stronger again a couple years later and different derealization experiences would come and go. But there were unique things about first getting sick which was very sudden. Neurological symptoms that were at their worst, and its own unique scariness because it was the first time they were happening and I did not know I was safe and that they were symptoms. At least you somewhat know they are symptoms and that you are safe to some degree, it sounds like? Thank goodness because that orientation to reality and to that they are medical symptoms is enormously helpful. Do you sometimes feel like you don't know who you are and where you are?

I don't have the worst derealization anymore and when I do it comes and goes sometimes when I am having disorientation of some sort with cognition changes I experience regularely. I got sick 8 years ago and my cognition started slowly improving in 2018. Now very much better even though I dip into various cognitive changes and brain fog.

Anyway I did some treatment that made that recovery of some symptoms happen but it was not autoimmune treatment. Now that I've found some of the sources of autoimmune encephalitis and other autoimmunities, I can treat them.

Your symptoms match well with autoimmune encephalitis and/or other autoimmune neurological disorders from what I've been learning. That you are deteriorating so rapidly is a good autoimmune indication from what I'm learning and it's really important you get your blood and csf tested for numerous antibodies and I hope very much that you are given that correct medical attention. Know that some autoimmune disorders like autoimmune encephalitis can progress to coma and death and that's not always the case at all at all, I never was in a coma! There's many manifestations and levels of how dangerous it gets. But. What you're going through and describe does need immediate medical attention.

Autoimmune neurological disorders can be gradual, there's many disorders, and autoimmune encephalitis can be gradual too from what I understand. Especially the getting worse. It would fit potentially that you had an autoimmune, or infectious, or post infectious neurological autoimmune process from the time you first got derealization. And that that same process, with maybe others added, got worse.

What I'm learning is that it's not unlikely to have more than one antibody that's affecting neurology. Could have several autoimmune processes. I mean, I do have, and that's what I'm seeing in research. Sometimes they call them "complexes" of antibodies. My ME doctor said many of their patients find several autoimmunities. Not necessarily all neurological ones though.

Recent thread where I talk about my recent experience with autoimmune encephalitis. https://forums.phoenixrising.me/threads/what-are-symptoms-of-autoimmune-encephalitis.84284/ And what tests I used and what other tests I suggested to them based on their symptoms and the typical diagnosis process like the cerebrospinal fluid testing. The suggestion to bring studies into your doctor I say to you too... Is it possible that you can do that? Whatever I'm researching on autoimmune neurological antibodies, I'm happy to share the study links and excerpts I'm compiling.
Click to expand...

Thank you so much for your answer.
I really need advice on what to do and how to get out if this situation.

Last weeks i was sure i would die, i couldnt process any information anymore... I was just looking at my girlfriend allday and talking was alright but anything else was to much. I had sunglasses on allday or my eyes closed.

Actually here in berlin is a famous research department for AE in the Charité, they also developed a new treatment. But you cant imagine how hard it is to get medical help. The ambulance doesnt know how to categorize the symptoms and put it as psychsomatic. So they just send me home even tho i cant walk. Funny thing is right next to the ambulance is the building were they research AE and my symptoms are so similiar. I got an admittance at the hospital but its in 1 month... They didnt believe me that it gets gradually worse an i need immediate help
 
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