Autoimmune mystery

Posted by 3les54 @3les54, Nov 6, 2019

In mid September, my wife went to the doctor about a sore throat. Not so unusual,since she us a high school teacher and is exposed to a variety of things throughout the year. She was also running a low grade fever, usually in the afternoons, but wasn’t at the time of her visit to the doctor. She was given a short course of antibiotics. While she was there she was persuaded to take a flu and Prevnar 13 shot (she is 65). By the time she got home, a rash developed at the injection site. By the next day, her back was covered with a rash two feet wide by three feet long. It looked like a poison ivy reaction. She continued to work but got weaker by the day. She did not want to go back to the doctor. At the end of September, I took her to the ER because of her deteriorating condition and she was experiencing periodic double vision. They did a pretty full work up on her (including a head and neck cT scan, one with iodine and one without, and xrays). She has mild bronchiectasis and the doctor – focusing on her low grade temperature and white blood cell count concluded she had a mild case of pneumonia. Two powerful antibiotics were prescribed and she was sent home. My wife has never taken much medication, and after three days the antibiotics had pretty much destroyed her stomach. On day four she stopped taking them. She had Abdominal pain and nausea. Her appetite began to fade. The rash was still present a month after it first appeared. Back to the doctor. We were referred to a neurologist, a pulmonologist, a rheumatologist and she underwent extensive testing, including for west Nile, HIV, valley fever, lupus, Sjögren’s, RA, and myasthenia gravis. She tested positive for RA but showed no symptoms of it. Negative on everything else. She continued to decline. I took her back to the ER and they admitted her to the hospital. Her kidneys were beginning to fail. In the hospital, the tests Continued. She could not (and still cannot) tolerate solid food because of the intense nausea. At the hospital she was given three different anti nausea medications through iv. She was even throwing up water. After four days, kidney function improved and the nausea was alleviated by medication. She was sent home. That was three weeks ago. Since then, she has remained very weak and has nausea almost all the time. She ingests only Boost/Ensure and water and occasionally a few tablespoons of cream of wheat. Since this started, she has lost 12 lbs, and is to all intents an invalid. The weight loss has stopped. The rash is gone. Every other day she consumes about 800 -1400 calories. The rest of the time we are lucky if she takes in 300-400. At times, she has muscle pain in her jaws. She can walk only 10 feet unassisted. We are trying major league probiotics, CBC oil and drops, vitamins, and electrolyte supplements. In short, after innumerable visits to the doctor, numerous phone consultations, 74 vials of blood drawn for testing, CT/MRI/X-ray, four days in the hospital, we are no closer to an solution or explanation than we were when we started. The nausea renders her incapable of sleeping more than three hours at a time. She drinks copious amounts of water (dry mouth). Her temperature spikes every afternoon between 6 and 7 pm at 100.5-101.8. Tomorrow we have more blood tests to monitor kidney function, to test for infectious disease, and to do a CT scan of her stomach and abdomen. Needless to say, her career as an AP teacher and Academic Decathlon coach are over. At this point, the best diagnosis we have is a general severe autoimmune disorder. Has anyone experienced anything similar? Our HMO doctors seem to have no definitive answers.

Hi.
My name is Megan, I'm 24 years old and I live in the UK.
So after crying for what felt like hours, I've decided to contact you guys. However I keep forgetting that it's on a website and that if I minimise this, I will loose everything I've written. It's annoying because I got really far with this message! So now I'm writing it on a blank email, so that; if I forget and minimise this, I won't loose everything I've just written. 😑
I'm in The Royal Sussex County Hospital in Brighton, UK and I'm desperate for your help.
I've been in the acute admissions unit for over 3 months and I'm progressively just getting worse.
It's hard for me to type now as I don't have the strength and my fingers hurt, but I'm desperate. I have my phone rested on the bottom bar of my bed, very close to me. This is because I don't have the strength to even hold my phone.
So, until today, I was pretty sure that I had autoimmune encephalitis. However today, I found out that my mri scan came out normal.
However today (11th of January 2020) I've just realised that, Susanah (the writer and survivor, who wrote the true book brain on fire) had all normal test results too. So there is still a possibility that I have it.
They've sent off 4 test tubes of blood off to test for antibodies that'd indicate that I have encephalitis. However, I'm told that these blood tests won't come back for weeks. Also blood tests aren't always that reliable either. They've sent a urin sample off too.
A neorologist saw me on the 8th of January 2020.he did several reflex tests and during it. My right leg started shaking out of control. He thinks that my reflexes are over working and that the link between my brain and my legs aren't working properly. He also moved my toes up and down and asked if I knew which way my toe was pointing. It felt weird and I could tell but not fully. (if that makes sense)
Right now they are questioning if it's mitochondrial, however I'm not convinced. I already have a rare chromosome deletion called 2q37.3; why would I have another DNA problem..? 🤔 Plus it doesn't solve why I'm having auditory and visual hallucinations.
I'm also told they are due to do more scans.
Someone told me that I should request a ct scan (cat scan) would that show anything when mri doesn't..?
I feel so low and I feel like a freak, a freak that no one knows what's wrong with.. 😭

So right now my symptoms are:
Worsening headaches that spread too my neck

Joint pain

Back pain

Eye pain (can't open my eyes very well)
Weakness that suddenly came on (can't sit up or even hold my head up)

Seeing/ hear in things (I can "hear" people talk about me, that sound very real; but they aren't. I have too wait for my parents too go to bed before I go to bed, because otherwise I will "hear" them talking about, causing me to cry. Even if I do though, it doesn't really help. I can't talk to someone and let them walk away without "hearing" them talk about me. I used too have to pretend to go to the toilet, so I could go past the living room; just to check they weren't talking about me. I thought that everyone was out to get me and that they were talking about me. And I didn't believe them when they say they don't; because I can hear it. Right now I'm hearing a high pitched noise that no one else can hear, tried recording the sound but even that didn't pick it up. It happens a lot at night.
I can't see properly, so when my dad got me to practice opening my eyes to look at a picture; every time I looked at it, the picture would change, I got it wrong every time. Plus apparently it was the same picture every time, but to me the picture kept changing. I looked at a picture, it was of my sisters on Christmas day one year; except I didn't recognise that it was of both of my sisters. Because to me, one had strands of blue hair. Later found that this was actually my sister wearing a blue Christmas cracker hat.
I'm in hospital right now, and I was convinced my room was a different shape and bigger than it actually is. This confused me so much. I could see windows that weren't there, doors that weren't there, a bookshelf that wasn't there. A purple settee and a brown arm chair that wasn't there. A clock and stairs? That weren't there.
I thought my bed was slanted or tilted, or thought I was high up. (my mum thought it was because I can't see)
I thought my bed was triangular and sometimes thought I had somehow got my body the opposite way round (so my head was where my feet was and my feet were where my head was.
Obviously this still confuses me, but yeah..

Lack off sleep (haven't slept properly in over a month and I take strong sleeping tablets)
The only time I can sleep is when I cry for hours, like last night (the 10th of January 2020) I think this is because crying makes me exhausted.

Dramatic mood swings/ outbursts (change in behavior)

Sudden impulsive outbursts. (had to be restrained by two/three people a few days ago. They said I was out of control)

Worsening mood and mental health (feel invisible!)

Increasing sickness (take two different types off anti sickness tablets. I used to take three but they thought that the third (metaclorfromide) caused my incontinence with number 2, back when I was in Southampton General Hospital. This wasn't the case!)

Dizziness

Mobility changes (went from walking too not even being able too sit up and its the third time! Every time it happens, it's always worse than the last!)

Short term memory thats just getting worse and worse (forgot my dad's phone number a few days ago and I've known that, even before I even memorised mine.
Last night (3.1.2020) I was talking too my friend online and I realised how much I couldn't remember. Its scary actually. So the last think I can remember talking too my friend; was actually two years ago. I don't remember any recent conversations, it's all blank. I know we had more conversations than that, because I looked at our conversation history. Also on the 9th of January 2020, my advocate from mind, was supposed too come and see me; but I forgot. I only remembered when he texted me to cancel due to car problems. On the 11th of January 2020, I completely forgot about the whole conversation with my friend online. I only remembered when I was scrolling through my phone and saw the messaging icon on my phone.)

Struggling too go for a wee and so I'm now having to force myself to go (not pleasant. And now I have a catheter, because I was retaining over 500)

I'm constipated and laxatives don't seem to work now.i think on the 7th of January 2020, I had to have an enema for the first time and it was so painful that I screamed. Starting from the 8th of January 2020 I became incontinent. This was just overflow and stopped after a few days, but then started again. Today, on the 11th of January 2020 I found out that I'm still being given a heavy lot of laxatives. I don't think this is the cause of my incontinence though, as; I think that I was given laxatives constantly, from before the 7th. I only had one day off them and that was on the 9th. This is strange because, normally one sachet of movicol turns me incontinent. Before I had the enema, I had been given: two sachets of movicol, docisate sodium and two lots of suppositories in one day. Nothing worked)

Antidepressants, antipsychotics and painkillers not working now.
I'm on paracetamol, oramorth (morphine sulthate) dihydrocodeine, ibuprofen, buscopan, amatriptaline, peppermint oil, deloxatine, quatiapine, omeprazole, cefalexine (my profalactic antibiotic), cyclazine, ondansatron, zopiclone, my anti histomeine, movicol, scenna, docisate sodium and suppositories.
And no, the strong painkillers are not the reason of why I was so constipated. I was on them for the whole of the time I've been here and I've been here for over three months now; throughout that time, I've been incontinent several times. I've never stopped taking the strong painkillers!)

When I could walk; at night I found myself struggling too (thought this was my quatiapine, but now I'm not so sure)

Struggling too talk because I forget what I'm saying, so can't complete sentences. Sometimes I don't even make sense, forget what I've said and repeat myself; and come out with random stuff sometimes.

Taking longer than usual too read stuff because of my eyesight issues.

Troubles concentrating. (will read something and then forget what I'm reading. The same for listening too stuff.

Saying stuff then a few hours later, forgetting what I said

Also I can't stop swearing and I get angry at anything and everything

I've had a urin infection for over three months and it's reaccuring and the last one was an e coli infection.

(when I could walk) At night, when it's dark; I try too stand up but quickly loose my balance and fall into things

I climbed a mountain in the lake district once and I struggled. Once at the top, my legs could no longer hold my body weight. This caused me too repeatedly fall over. My dad had too help me down and it was so hard that I kept falling, getting up was also very hard.

I've fainted several times and I got a black eye by fainting once.

I don't really remember this but, before being admitted; apparently it looked like I passed out, my eyes were rolling too. All I can remember is feeling very low and just out off it.

I'm having massive identity crisis, where I'm questioning who I am now and even my own identity. (voices in my head told me that if I just woke up one day, I could just push everything about me away and sayim someone else. I was convinced this would help me. I was going too deny my identity and change how I look and who I was, change everything about me)

A horrible sore throat (some people thought it was oral thrush as I have a white tongue)

Increasing pain and sickness (my pain is just unbearable right now and it's just getting worse every hour and every day; as that gets worse, so does my sickness)

Freaking out about stuff (so on my first night in AAU; I had these horrible nightmare dreams, where I was just floating (very complicated) then suddenly I had a reality shock of where I was, but when I woke up, it felt like I had just come back too life. Gasping as I woke up. I didn't even realise I had gone to sleep, so I screamed. It honestly felt like i had just been resuscitated back from the dead. This obviously scared me.
However then I thought I heard myself scream over and over again, like they were watching a recording off me. I thought the room had like an upper office with like a huge glass window, so that they could see us. I thought I heard them say "the doctors gonna want to see this"
Then later "why would you test on her, it's just her first night"
I then thought they had put something down my tube and done a test on me, too make me have the nightmare dream and have that reaction and feeling of being resuscitated back too life.
Then later on I thought I heard "liar, liar, its all in your head"

The next evening/night, I thought they were having a secret meeting about me in the next room. My dad said no one was talking about me, but I could "hear" them. It's like I could hear it and my dad couldn't.
So I heard t

Also I don't know if this is relivent or not but I have got this internal itching down below that is a mystery too my doctors

So I've got various different diagnosises and my symptoms are a mystery too my doctors.
I have been diagnosed with severe depression, anxiety, anorexia, BPD (supposedly) autism, a rare chromosome deletion called 2Q37.3 and ehlers danlos syndrome.
However I think I have encephalitis and that is the cause off my mystery symptoms and illnesses.
I also have an ng tube due too NY anorexia and have been sectioned since the 12th of July 2018. I haven't eaten anything solid since September 2017 and I lost my hunger very very quickly! I also haven't drank anything for over a year and a half now and my first disappeared quickly too!

So my immune system has always been low and I catch infections really badly and they are always very hard too get rid off.

Around the age of 17 I overdosed and was told that if I had taken just one more tablet, I would have died. I was told that I was in the CCU for a while but i don't remember anything other than be in in a strange ward with a cardiac machine. Quite freaky really!

Growing up I remembered struggling too balance and walk, this caused bullying.

REPLY

Obviously not finished this…

REPLY
@horselover7216

Hi.
My name is Megan, I'm 24 years old and I live in the UK.
So after crying for what felt like hours, I've decided to contact you guys. However I keep forgetting that it's on a website and that if I minimise this, I will loose everything I've written. It's annoying because I got really far with this message! So now I'm writing it on a blank email, so that; if I forget and minimise this, I won't loose everything I've just written. 😑
I'm in The Royal Sussex County Hospital in Brighton, UK and I'm desperate for your help.
I've been in the acute admissions unit for over 3 months and I'm progressively just getting worse.
It's hard for me to type now as I don't have the strength and my fingers hurt, but I'm desperate. I have my phone rested on the bottom bar of my bed, very close to me. This is because I don't have the strength to even hold my phone.
So, until today, I was pretty sure that I had autoimmune encephalitis. However today, I found out that my mri scan came out normal.
However today (11th of January 2020) I've just realised that, Susanah (the writer and survivor, who wrote the true book brain on fire) had all normal test results too. So there is still a possibility that I have it.
They've sent off 4 test tubes of blood off to test for antibodies that'd indicate that I have encephalitis. However, I'm told that these blood tests won't come back for weeks. Also blood tests aren't always that reliable either. They've sent a urin sample off too.
A neorologist saw me on the 8th of January 2020.he did several reflex tests and during it. My right leg started shaking out of control. He thinks that my reflexes are over working and that the link between my brain and my legs aren't working properly. He also moved my toes up and down and asked if I knew which way my toe was pointing. It felt weird and I could tell but not fully. (if that makes sense)
Right now they are questioning if it's mitochondrial, however I'm not convinced. I already have a rare chromosome deletion called 2q37.3; why would I have another DNA problem..? 🤔 Plus it doesn't solve why I'm having auditory and visual hallucinations.
I'm also told they are due to do more scans.
Someone told me that I should request a ct scan (cat scan) would that show anything when mri doesn't..?
I feel so low and I feel like a freak, a freak that no one knows what's wrong with.. 😭

So right now my symptoms are:
Worsening headaches that spread too my neck

Joint pain

Back pain

Eye pain (can't open my eyes very well)
Weakness that suddenly came on (can't sit up or even hold my head up)

Seeing/ hear in things (I can "hear" people talk about me, that sound very real; but they aren't. I have too wait for my parents too go to bed before I go to bed, because otherwise I will "hear" them talking about, causing me to cry. Even if I do though, it doesn't really help. I can't talk to someone and let them walk away without "hearing" them talk about me. I used too have to pretend to go to the toilet, so I could go past the living room; just to check they weren't talking about me. I thought that everyone was out to get me and that they were talking about me. And I didn't believe them when they say they don't; because I can hear it. Right now I'm hearing a high pitched noise that no one else can hear, tried recording the sound but even that didn't pick it up. It happens a lot at night.
I can't see properly, so when my dad got me to practice opening my eyes to look at a picture; every time I looked at it, the picture would change, I got it wrong every time. Plus apparently it was the same picture every time, but to me the picture kept changing. I looked at a picture, it was of my sisters on Christmas day one year; except I didn't recognise that it was of both of my sisters. Because to me, one had strands of blue hair. Later found that this was actually my sister wearing a blue Christmas cracker hat.
I'm in hospital right now, and I was convinced my room was a different shape and bigger than it actually is. This confused me so much. I could see windows that weren't there, doors that weren't there, a bookshelf that wasn't there. A purple settee and a brown arm chair that wasn't there. A clock and stairs? That weren't there.
I thought my bed was slanted or tilted, or thought I was high up. (my mum thought it was because I can't see)
I thought my bed was triangular and sometimes thought I had somehow got my body the opposite way round (so my head was where my feet was and my feet were where my head was.
Obviously this still confuses me, but yeah..

Lack off sleep (haven't slept properly in over a month and I take strong sleeping tablets)
The only time I can sleep is when I cry for hours, like last night (the 10th of January 2020) I think this is because crying makes me exhausted.

Dramatic mood swings/ outbursts (change in behavior)

Sudden impulsive outbursts. (had to be restrained by two/three people a few days ago. They said I was out of control)

Worsening mood and mental health (feel invisible!)

Increasing sickness (take two different types off anti sickness tablets. I used to take three but they thought that the third (metaclorfromide) caused my incontinence with number 2, back when I was in Southampton General Hospital. This wasn't the case!)

Dizziness

Mobility changes (went from walking too not even being able too sit up and its the third time! Every time it happens, it's always worse than the last!)

Short term memory thats just getting worse and worse (forgot my dad's phone number a few days ago and I've known that, even before I even memorised mine.
Last night (3.1.2020) I was talking too my friend online and I realised how much I couldn't remember. Its scary actually. So the last think I can remember talking too my friend; was actually two years ago. I don't remember any recent conversations, it's all blank. I know we had more conversations than that, because I looked at our conversation history. Also on the 9th of January 2020, my advocate from mind, was supposed too come and see me; but I forgot. I only remembered when he texted me to cancel due to car problems. On the 11th of January 2020, I completely forgot about the whole conversation with my friend online. I only remembered when I was scrolling through my phone and saw the messaging icon on my phone.)

Struggling too go for a wee and so I'm now having to force myself to go (not pleasant. And now I have a catheter, because I was retaining over 500)

I'm constipated and laxatives don't seem to work now.i think on the 7th of January 2020, I had to have an enema for the first time and it was so painful that I screamed. Starting from the 8th of January 2020 I became incontinent. This was just overflow and stopped after a few days, but then started again. Today, on the 11th of January 2020 I found out that I'm still being given a heavy lot of laxatives. I don't think this is the cause of my incontinence though, as; I think that I was given laxatives constantly, from before the 7th. I only had one day off them and that was on the 9th. This is strange because, normally one sachet of movicol turns me incontinent. Before I had the enema, I had been given: two sachets of movicol, docisate sodium and two lots of suppositories in one day. Nothing worked)

Antidepressants, antipsychotics and painkillers not working now.
I'm on paracetamol, oramorth (morphine sulthate) dihydrocodeine, ibuprofen, buscopan, amatriptaline, peppermint oil, deloxatine, quatiapine, omeprazole, cefalexine (my profalactic antibiotic), cyclazine, ondansatron, zopiclone, my anti histomeine, movicol, scenna, docisate sodium and suppositories.
And no, the strong painkillers are not the reason of why I was so constipated. I was on them for the whole of the time I've been here and I've been here for over three months now; throughout that time, I've been incontinent several times. I've never stopped taking the strong painkillers!)

When I could walk; at night I found myself struggling too (thought this was my quatiapine, but now I'm not so sure)

Struggling too talk because I forget what I'm saying, so can't complete sentences. Sometimes I don't even make sense, forget what I've said and repeat myself; and come out with random stuff sometimes.

Taking longer than usual too read stuff because of my eyesight issues.

Troubles concentrating. (will read something and then forget what I'm reading. The same for listening too stuff.

Saying stuff then a few hours later, forgetting what I said

Also I can't stop swearing and I get angry at anything and everything

I've had a urin infection for over three months and it's reaccuring and the last one was an e coli infection.

(when I could walk) At night, when it's dark; I try too stand up but quickly loose my balance and fall into things

I climbed a mountain in the lake district once and I struggled. Once at the top, my legs could no longer hold my body weight. This caused me too repeatedly fall over. My dad had too help me down and it was so hard that I kept falling, getting up was also very hard.

I've fainted several times and I got a black eye by fainting once.

I don't really remember this but, before being admitted; apparently it looked like I passed out, my eyes were rolling too. All I can remember is feeling very low and just out off it.

I'm having massive identity crisis, where I'm questioning who I am now and even my own identity. (voices in my head told me that if I just woke up one day, I could just push everything about me away and sayim someone else. I was convinced this would help me. I was going too deny my identity and change how I look and who I was, change everything about me)

A horrible sore throat (some people thought it was oral thrush as I have a white tongue)

Increasing pain and sickness (my pain is just unbearable right now and it's just getting worse every hour and every day; as that gets worse, so does my sickness)

Freaking out about stuff (so on my first night in AAU; I had these horrible nightmare dreams, where I was just floating (very complicated) then suddenly I had a reality shock of where I was, but when I woke up, it felt like I had just come back too life. Gasping as I woke up. I didn't even realise I had gone to sleep, so I screamed. It honestly felt like i had just been resuscitated back from the dead. This obviously scared me.
However then I thought I heard myself scream over and over again, like they were watching a recording off me. I thought the room had like an upper office with like a huge glass window, so that they could see us. I thought I heard them say "the doctors gonna want to see this"
Then later "why would you test on her, it's just her first night"
I then thought they had put something down my tube and done a test on me, too make me have the nightmare dream and have that reaction and feeling of being resuscitated back too life.
Then later on I thought I heard "liar, liar, its all in your head"

The next evening/night, I thought they were having a secret meeting about me in the next room. My dad said no one was talking about me, but I could "hear" them. It's like I could hear it and my dad couldn't.
So I heard t

Also I don't know if this is relivent or not but I have got this internal itching down below that is a mystery too my doctors

So I've got various different diagnosises and my symptoms are a mystery too my doctors.
I have been diagnosed with severe depression, anxiety, anorexia, BPD (supposedly) autism, a rare chromosome deletion called 2Q37.3 and ehlers danlos syndrome.
However I think I have encephalitis and that is the cause off my mystery symptoms and illnesses.
I also have an ng tube due too NY anorexia and have been sectioned since the 12th of July 2018. I haven't eaten anything solid since September 2017 and I lost my hunger very very quickly! I also haven't drank anything for over a year and a half now and my first disappeared quickly too!

So my immune system has always been low and I catch infections really badly and they are always very hard too get rid off.

Around the age of 17 I overdosed and was told that if I had taken just one more tablet, I would have died. I was told that I was in the CCU for a while but i don't remember anything other than be in in a strange ward with a cardiac machine. Quite freaky really!

Growing up I remembered struggling too balance and walk, this caused bullying.

Jump to this post

Hello Megan @horselover7216, I can't begin to understand how hard it must be for you to deal with this condition and not finding a diagnosis or treatment that helps. I think it is really good that you are advocating for your health and learning as much as you can about your symptoms and condition. It's good to keep a list like you are doing now. I don't know anything about healthcare in the UK. Is there a possibility that you can see a specialist or get a second opinion based on all your symptoms?

There is another discussion that you might want to read through.

> Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

The discussion talks about Jennifer Brea who was eventually diagnosed with myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS) in the United States. No longer able to read and write, she began an iPhone video diary to document her experience. She also has a TED talk that you might be interested in watching.

What happens when you have a disease doctors can't diagnose TED talk by TED Fellow Jennifer Brea who became progressively ill with
myalgic encephalomyelitis, commonly known as chronic fatigue syndrome.
https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

REPLY
@horselover7216

Hi.
My name is Megan, I'm 24 years old and I live in the UK.
So after crying for what felt like hours, I've decided to contact you guys. However I keep forgetting that it's on a website and that if I minimise this, I will loose everything I've written. It's annoying because I got really far with this message! So now I'm writing it on a blank email, so that; if I forget and minimise this, I won't loose everything I've just written. 😑
I'm in The Royal Sussex County Hospital in Brighton, UK and I'm desperate for your help.
I've been in the acute admissions unit for over 3 months and I'm progressively just getting worse.
It's hard for me to type now as I don't have the strength and my fingers hurt, but I'm desperate. I have my phone rested on the bottom bar of my bed, very close to me. This is because I don't have the strength to even hold my phone.
So, until today, I was pretty sure that I had autoimmune encephalitis. However today, I found out that my mri scan came out normal.
However today (11th of January 2020) I've just realised that, Susanah (the writer and survivor, who wrote the true book brain on fire) had all normal test results too. So there is still a possibility that I have it.
They've sent off 4 test tubes of blood off to test for antibodies that'd indicate that I have encephalitis. However, I'm told that these blood tests won't come back for weeks. Also blood tests aren't always that reliable either. They've sent a urin sample off too.
A neorologist saw me on the 8th of January 2020.he did several reflex tests and during it. My right leg started shaking out of control. He thinks that my reflexes are over working and that the link between my brain and my legs aren't working properly. He also moved my toes up and down and asked if I knew which way my toe was pointing. It felt weird and I could tell but not fully. (if that makes sense)
Right now they are questioning if it's mitochondrial, however I'm not convinced. I already have a rare chromosome deletion called 2q37.3; why would I have another DNA problem..? 🤔 Plus it doesn't solve why I'm having auditory and visual hallucinations.
I'm also told they are due to do more scans.
Someone told me that I should request a ct scan (cat scan) would that show anything when mri doesn't..?
I feel so low and I feel like a freak, a freak that no one knows what's wrong with.. 😭

So right now my symptoms are:
Worsening headaches that spread too my neck

Joint pain

Back pain

Eye pain (can't open my eyes very well)
Weakness that suddenly came on (can't sit up or even hold my head up)

Seeing/ hear in things (I can "hear" people talk about me, that sound very real; but they aren't. I have too wait for my parents too go to bed before I go to bed, because otherwise I will "hear" them talking about, causing me to cry. Even if I do though, it doesn't really help. I can't talk to someone and let them walk away without "hearing" them talk about me. I used too have to pretend to go to the toilet, so I could go past the living room; just to check they weren't talking about me. I thought that everyone was out to get me and that they were talking about me. And I didn't believe them when they say they don't; because I can hear it. Right now I'm hearing a high pitched noise that no one else can hear, tried recording the sound but even that didn't pick it up. It happens a lot at night.
I can't see properly, so when my dad got me to practice opening my eyes to look at a picture; every time I looked at it, the picture would change, I got it wrong every time. Plus apparently it was the same picture every time, but to me the picture kept changing. I looked at a picture, it was of my sisters on Christmas day one year; except I didn't recognise that it was of both of my sisters. Because to me, one had strands of blue hair. Later found that this was actually my sister wearing a blue Christmas cracker hat.
I'm in hospital right now, and I was convinced my room was a different shape and bigger than it actually is. This confused me so much. I could see windows that weren't there, doors that weren't there, a bookshelf that wasn't there. A purple settee and a brown arm chair that wasn't there. A clock and stairs? That weren't there.
I thought my bed was slanted or tilted, or thought I was high up. (my mum thought it was because I can't see)
I thought my bed was triangular and sometimes thought I had somehow got my body the opposite way round (so my head was where my feet was and my feet were where my head was.
Obviously this still confuses me, but yeah..

Lack off sleep (haven't slept properly in over a month and I take strong sleeping tablets)
The only time I can sleep is when I cry for hours, like last night (the 10th of January 2020) I think this is because crying makes me exhausted.

Dramatic mood swings/ outbursts (change in behavior)

Sudden impulsive outbursts. (had to be restrained by two/three people a few days ago. They said I was out of control)

Worsening mood and mental health (feel invisible!)

Increasing sickness (take two different types off anti sickness tablets. I used to take three but they thought that the third (metaclorfromide) caused my incontinence with number 2, back when I was in Southampton General Hospital. This wasn't the case!)

Dizziness

Mobility changes (went from walking too not even being able too sit up and its the third time! Every time it happens, it's always worse than the last!)

Short term memory thats just getting worse and worse (forgot my dad's phone number a few days ago and I've known that, even before I even memorised mine.
Last night (3.1.2020) I was talking too my friend online and I realised how much I couldn't remember. Its scary actually. So the last think I can remember talking too my friend; was actually two years ago. I don't remember any recent conversations, it's all blank. I know we had more conversations than that, because I looked at our conversation history. Also on the 9th of January 2020, my advocate from mind, was supposed too come and see me; but I forgot. I only remembered when he texted me to cancel due to car problems. On the 11th of January 2020, I completely forgot about the whole conversation with my friend online. I only remembered when I was scrolling through my phone and saw the messaging icon on my phone.)

Struggling too go for a wee and so I'm now having to force myself to go (not pleasant. And now I have a catheter, because I was retaining over 500)

I'm constipated and laxatives don't seem to work now.i think on the 7th of January 2020, I had to have an enema for the first time and it was so painful that I screamed. Starting from the 8th of January 2020 I became incontinent. This was just overflow and stopped after a few days, but then started again. Today, on the 11th of January 2020 I found out that I'm still being given a heavy lot of laxatives. I don't think this is the cause of my incontinence though, as; I think that I was given laxatives constantly, from before the 7th. I only had one day off them and that was on the 9th. This is strange because, normally one sachet of movicol turns me incontinent. Before I had the enema, I had been given: two sachets of movicol, docisate sodium and two lots of suppositories in one day. Nothing worked)

Antidepressants, antipsychotics and painkillers not working now.
I'm on paracetamol, oramorth (morphine sulthate) dihydrocodeine, ibuprofen, buscopan, amatriptaline, peppermint oil, deloxatine, quatiapine, omeprazole, cefalexine (my profalactic antibiotic), cyclazine, ondansatron, zopiclone, my anti histomeine, movicol, scenna, docisate sodium and suppositories.
And no, the strong painkillers are not the reason of why I was so constipated. I was on them for the whole of the time I've been here and I've been here for over three months now; throughout that time, I've been incontinent several times. I've never stopped taking the strong painkillers!)

When I could walk; at night I found myself struggling too (thought this was my quatiapine, but now I'm not so sure)

Struggling too talk because I forget what I'm saying, so can't complete sentences. Sometimes I don't even make sense, forget what I've said and repeat myself; and come out with random stuff sometimes.

Taking longer than usual too read stuff because of my eyesight issues.

Troubles concentrating. (will read something and then forget what I'm reading. The same for listening too stuff.

Saying stuff then a few hours later, forgetting what I said

Also I can't stop swearing and I get angry at anything and everything

I've had a urin infection for over three months and it's reaccuring and the last one was an e coli infection.

(when I could walk) At night, when it's dark; I try too stand up but quickly loose my balance and fall into things

I climbed a mountain in the lake district once and I struggled. Once at the top, my legs could no longer hold my body weight. This caused me too repeatedly fall over. My dad had too help me down and it was so hard that I kept falling, getting up was also very hard.

I've fainted several times and I got a black eye by fainting once.

I don't really remember this but, before being admitted; apparently it looked like I passed out, my eyes were rolling too. All I can remember is feeling very low and just out off it.

I'm having massive identity crisis, where I'm questioning who I am now and even my own identity. (voices in my head told me that if I just woke up one day, I could just push everything about me away and sayim someone else. I was convinced this would help me. I was going too deny my identity and change how I look and who I was, change everything about me)

A horrible sore throat (some people thought it was oral thrush as I have a white tongue)

Increasing pain and sickness (my pain is just unbearable right now and it's just getting worse every hour and every day; as that gets worse, so does my sickness)

Freaking out about stuff (so on my first night in AAU; I had these horrible nightmare dreams, where I was just floating (very complicated) then suddenly I had a reality shock of where I was, but when I woke up, it felt like I had just come back too life. Gasping as I woke up. I didn't even realise I had gone to sleep, so I screamed. It honestly felt like i had just been resuscitated back from the dead. This obviously scared me.
However then I thought I heard myself scream over and over again, like they were watching a recording off me. I thought the room had like an upper office with like a huge glass window, so that they could see us. I thought I heard them say "the doctors gonna want to see this"
Then later "why would you test on her, it's just her first night"
I then thought they had put something down my tube and done a test on me, too make me have the nightmare dream and have that reaction and feeling of being resuscitated back too life.
Then later on I thought I heard "liar, liar, its all in your head"

The next evening/night, I thought they were having a secret meeting about me in the next room. My dad said no one was talking about me, but I could "hear" them. It's like I could hear it and my dad couldn't.
So I heard t

Also I don't know if this is relivent or not but I have got this internal itching down below that is a mystery too my doctors

So I've got various different diagnosises and my symptoms are a mystery too my doctors.
I have been diagnosed with severe depression, anxiety, anorexia, BPD (supposedly) autism, a rare chromosome deletion called 2Q37.3 and ehlers danlos syndrome.
However I think I have encephalitis and that is the cause off my mystery symptoms and illnesses.
I also have an ng tube due too NY anorexia and have been sectioned since the 12th of July 2018. I haven't eaten anything solid since September 2017 and I lost my hunger very very quickly! I also haven't drank anything for over a year and a half now and my first disappeared quickly too!

So my immune system has always been low and I catch infections really badly and they are always very hard too get rid off.

Around the age of 17 I overdosed and was told that if I had taken just one more tablet, I would have died. I was told that I was in the CCU for a while but i don't remember anything other than be in in a strange ward with a cardiac machine. Quite freaky really!

Growing up I remembered struggling too balance and walk, this caused bullying.

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@horselover7216 Good morning. All of this must be so difficult for you. And your parents. You mentioned having an MRI—do you know if was ‘with’ contrast (dye)? The physicians here have to use contrast/dye with my brain just to make sure they can see everything. You also mentioned that you’ve not eaten since September 2017. And you’ve been on an NG tube this whole time? And you’re not sleeping? Wow, sleep deprivation, alone, can cause problems. I certainly hope someone can find answers for you.
I agree with @johnbishop suggestion of the TED talk (see link above). I read the book and it’s fascinating. Please stay in touch with us

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@becsbuddy

@horselover7216 Good morning. All of this must be so difficult for you. And your parents. You mentioned having an MRI—do you know if was ‘with’ contrast (dye)? The physicians here have to use contrast/dye with my brain just to make sure they can see everything. You also mentioned that you’ve not eaten since September 2017. And you’ve been on an NG tube this whole time? And you’re not sleeping? Wow, sleep deprivation, alone, can cause problems. I certainly hope someone can find answers for you.
I agree with @johnbishop suggestion of the TED talk (see link above). I read the book and it’s fascinating. Please stay in touch with us

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Hi.
No it was a normal mri. Think they only use contrast with ct (cat scans)

My mood is just getting worse and I'm getting weaker and weaker physically and mentally.
I had a breakdown that has now pushed me back too being unresponsive again.
I keep seeing and hearing stuff still and it's hard!
My NG tube was put back in in the 3rd day without fluids, meds or feed.
I'm still not having my feed though, as I'm refusing it.
I've had my NG tube since, like the 12th of January 2018.

Can low blood sugars cause encephalitis.
I've also had the neuro virus for the first time on November 2018.

Bloods have been sent but, what if they come out negative…
Don't know how much longer I can cope, too keep fighting for more scans and tests.
My mind is blank and foggy!

I'm now on melatonin instead off zopiclone too see if I can sleep better 😑

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@horselover7216

Hi.
No it was a normal mri. Think they only use contrast with ct (cat scans)

My mood is just getting worse and I'm getting weaker and weaker physically and mentally.
I had a breakdown that has now pushed me back too being unresponsive again.
I keep seeing and hearing stuff still and it's hard!
My NG tube was put back in in the 3rd day without fluids, meds or feed.
I'm still not having my feed though, as I'm refusing it.
I've had my NG tube since, like the 12th of January 2018.

Can low blood sugars cause encephalitis.
I've also had the neuro virus for the first time on November 2018.

Bloods have been sent but, what if they come out negative…
Don't know how much longer I can cope, too keep fighting for more scans and tests.
My mind is blank and foggy!

I'm now on melatonin instead off zopiclone too see if I can sleep better 😑

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@horselover7216 I don’t know what to say. You have an NG tube but no meds or fluids because you refuse them. Low blood sugar doesn’t cause encephalitis but it can harm your brain. You said you had a breakdown and were unresponsive again. Can you tell me what happened to cause this? I know it’s very hard being in hospital for so long. Please try to continue working with the doctors! We want the best for you

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@horselover7216 – Hi! I have followed your posts and conversations. I understand that you are very sick with possible autoimmune encephalitis- correct? I’m so impressed with your detailed posts- it must be very hard – but you are angry and that helps you trying to find out how to get better. Encephalitis of any kind will cause panic in your central nervous system. I also understand that all testing you have had still does not pinpoint the cause. I had hallucinations like yours once/ after a surgery where I from unknown causes got fluid in my lungs and less oxygen to the brain.
The impression I get is that you don’t understand why you get all these problems- such as inability to urinate and fecal incontinence in addition to everything else. What I would do- if I were you- is asking the doctors- especially the neurologist- why each symptom occurs- write questions down and write down answers- or have someone write for you- so you can go over these answers when you get confused and angry. I so hope for you that you get back to normal soon!!

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@janyce

Many of these symptoms sound very familiar to me. I have had double vision for two years. Blood tests have been negative for myasthenia Gravis but when I became ill with similar problems this summer I have been diagnosed with mg. I have a new neurologist and am under treatment. I am 81 years old and seldom feel well but I am encouraged.
Please get the doctors to consider treating her for ms! I get IVIG every 4 weeks. I take Celcept and steroids (slowly reducing these).

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Have you been tested for autoimmune encephalitis?

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Did your wife get tested for Autoimmune Encephalitis? Any doctor can draw the bloodwork and have it send to Mayo Rochester lab. If she has a teratoma or a possible herpes virus, it’s a likely culprit. Most doctors are not familiar with it but there is a lot on the internet about it. You probably need to go to a teaching hospital and get a doctor that actually has treated it before, most have not! It can get a lot worse without treatment.

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@molly48823

Mostly back to normal, except occasional sometimes routine fatigue. And hot weather just does me in. I continued to work as I could at a significantly reduced % effort and doing a lot from home. Am still working very part time job in same field. Yard work went by the wayside as did housework but I never liked that anyway so this was a good excuse! I am in remission altho my primary doctor (a rheumatologist) doesn’t seem to like that term. I encourage you to completely take it easy for a few months to let your body focus on getting better. Also, ask to meet with a dietician who specializes in kidney disease to discuss your diet and what if anything needs to change. If the docs direct such a consult, your insurance should pay for it. Pls doesn’t hesitate to ask any questions or we can talk by phone when you’re up to it. Just take care of yourself and let your body heal itself.

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Just checking in to see how you are doing. I know the first few days, which become weeks, can be overwhelming. Please try to take it a day at a time so you are not overwhelmed. You may not have heard about an important, sort of informal, way of dealing with chronic illness that may benefit you: https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1 . Will help you, and your family help you, deal with this huge change in your life and lifestyle.

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@astaingegerdm

@horselover7216 – Hi! I have followed your posts and conversations. I understand that you are very sick with possible autoimmune encephalitis- correct? I’m so impressed with your detailed posts- it must be very hard – but you are angry and that helps you trying to find out how to get better. Encephalitis of any kind will cause panic in your central nervous system. I also understand that all testing you have had still does not pinpoint the cause. I had hallucinations like yours once/ after a surgery where I from unknown causes got fluid in my lungs and less oxygen to the brain.
The impression I get is that you don’t understand why you get all these problems- such as inability to urinate and fecal incontinence in addition to everything else. What I would do- if I were you- is asking the doctors- especially the neurologist- why each symptom occurs- write questions down and write down answers- or have someone write for you- so you can go over these answers when you get confused and angry. I so hope for you that you get back to normal soon!!

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Hi
I'm sorry, I want too reply but my brain is just empty.. Cloudy.. Can't think of anything anymore.. Can't even type..
Feels like my body is just shutting down and can barely feel anything anymore… Not even emotions.
I went from out off control anger, too nothing…
I can just shut my eyes and just kind off drift off…

How do you go from, severe pain too just a dull ache? It's like it's there, but not there; if you know what I mean..

How do go from pure anger, too barely anything..

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I am so sorry for what your wife has gone through. My autoimmune disease Errosive Lichen Planus I have had is best treated in University hospital and specialists in those areas. I’m starting my 5th decade. I get better and then have flares. If your HMO cannot diagnose you’re wife’s problems and they appear very sever perhaps asking for a referral to A large medical teaching hospital will help. Most will require all her medical history. My very best wishes for a remission. I know how frustrating these autoimmune diseases are. I have good years and bad years and frustration continues, but their are medical people who care!

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