Chronic Illnesses of Millions of Women Left Untreated

Cosmopolitan magazine today published a stark and disturbing article about one woman’s fate in the hands of modern medical treatment-givers. Here’s the link to the distressing article: https://www.cosmopolitan.com/lifestyle/a12779054/what-is-chronic-fatigue-syndrome/.

Brea 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.

Her documentary, “Unrest,” which is out now in select theaters and will be on iTunes next month, features that footage, along with interviews with other severely ill ME/CFS patients, which Brea conducted from her bed via Skype. It provides a harrowing look at what it’s like to live with this one poorly understood, incurable disease that’s estimated to affect about 800,000 to 2.5 million Americans.

Many women also suffer from other invisible chronic diseases — from fibromyalgia to vulvodynia to interstitial cystitis to migraine — that have historically been seen as psychosomatic and remain poorly understood.

Thanks for sharing this article Martin @predictable. She also has a great TED talk. It's good to see this get a lot of coverage with so many women affected.

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

John

REPLY

Thank you, Martin, @predictable and John, @johnbishop for this information.

Women's illnesses still get put on the back-burner so to speak and this is important information for all of us.

Teresa

REPLY

Interesting article! I remember when we lived in New Mexico. My wife and I both hurt our backs. The doctors put me in the hospital for 24 hours of intensive paint management, therapy, etc. saying 'we have to get you back to work'. They literally told my wife 'why don't you go home, relax on the sofa, and you'll feel better'. She worked too, but that was of no concern to the doctors!

Hopefully the world is changing….at least a little bit!

Strength, courage, and peace!

REPLY
@johnbishop

Thanks for sharing this article Martin @predictable. She also has a great TED talk. It's good to see this get a lot of coverage with so many women affected.

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

John

Jump to this post

Thank you John. This is very enlightening. I have suspected that this has been happening for some time now. This is happening not just with me but with other women (and men) for a long time now. I wonder if the same knowledge is being taught in the medical schools now that has been taught in the past. The doctors of today do not seem as knowledgeable as the doctors of yesterday. Are they passing students who perhaps are cheating on the exams? Or perhaps have they lowered the standards???? This is not to put down the medical field in any way but to examine this very, very carefully because people's lives are at stake here.

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I can relate. I too suffer from chronic symptoms. I have seen 8 specialists. For over 3 years I have chronic symmertic burning in both arms and hands (prickly, tingling burning hot/cold sensation) Chronic double vision in R eye is 6th Cranial Nerve Palsy. I now have a pulsating buzz in my left foot. I can not get any answers. I don't know if it is because medical standards are lower, I am female, or because I am 71. I feel blown off by Drs. I would love to hear a Dr. say, I can't help you but I know someone who can. Luckily I never give up, I am hopeful.

REPLY
@finnie

I can relate. I too suffer from chronic symptoms. I have seen 8 specialists. For over 3 years I have chronic symmertic burning in both arms and hands (prickly, tingling burning hot/cold sensation) Chronic double vision in R eye is 6th Cranial Nerve Palsy. I now have a pulsating buzz in my left foot. I can not get any answers. I don't know if it is because medical standards are lower, I am female, or because I am 71. I feel blown off by Drs. I would love to hear a Dr. say, I can't help you but I know someone who can. Luckily I never give up, I am hopeful.

Jump to this post

Dear Finnie, wow! You have hit the nail on the head. Do not worry on this to much as there is not much we can do. I am 82 and this attitude of many of the doctors is because (I think) they really do not care, it is beyond their expertise, or our age is a turn off, and if they have not suffered enough in their lifetime to understand, and on and on. But we all know this. Notice I said ,"many" of the doctors and not all of them. We cannot take this to seriously. I do not think that the doctors of today are as educated as what was before. Perhaps the educational system has regressed and on and on. What I do is to research on line, in books, wherever we can and with some common sense perhaps we can find some relief with diet firstly and loving ourselves. I do care for you and I am sure there are others as well. Do take care of yourself. Peach

REPLY
@hopeful33250

Thank you, Martin, @predictable and John, @johnbishop for this information.

Women's illnesses still get put on the back-burner so to speak and this is important information for all of us.

Teresa

Jump to this post

It's disgusting. It took me ten years to be diagnosed with my autoimmune disease. Since then things have taken a scary turn, with this disease in the mix…

REPLY
@peach414144

Dear Finnie, wow! You have hit the nail on the head. Do not worry on this to much as there is not much we can do. I am 82 and this attitude of many of the doctors is because (I think) they really do not care, it is beyond their expertise, or our age is a turn off, and if they have not suffered enough in their lifetime to understand, and on and on. But we all know this. Notice I said ,"many" of the doctors and not all of them. We cannot take this to seriously. I do not think that the doctors of today are as educated as what was before. Perhaps the educational system has regressed and on and on. What I do is to research on line, in books, wherever we can and with some common sense perhaps we can find some relief with diet firstly and loving ourselves. I do care for you and I am sure there are others as well. Do take care of yourself. Peach

Jump to this post

I believe your age should not matter. There are serious issues within the medical community with prejudice and misunderstanding. I think we are still in the dark ages of medicine and big Pharma and insurance companies not helping the situation…

REPLY

@rarelybees2889 I agree that age is a major element in deciding treatment, and Big Pharma is right there running the show. I took a hormone for years. My gynecologist told me I would need it for life. And, when we moved, my new doc continued the prescription. However, two years ago the insurance would not cover and denied the prescription because of my age. Now, they didn't say that, but my dr. did. There was nothing she could do. She filed letters of complaint and we did too, but to no avail. I will never understand that. If your doctor prescribes, and you have insurance, the pill business should not be allowed to deny it. Why do I go to a doctor? The insurance offices should just practice medicine! It's wrong and ridiculous, but not even doctors can do anything about it.
Carol

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@retiredteacher– I so agree. Big pharma writes their own ticket and so do the insurance companies. Hopefully in the future things will change, but that doesn't help now. If you can, pay for anything yourself.

Liked by lioness

REPLY

Hi.
I have a mystery illness and I'm loosing more and more energy every day and I'm battling with the doctors on getting more expensive tests done.
I'm loosing hope and very suicidal and I think three? Days ago (memory is none existant and my brain is just blank and fuzzy) I tried strangling myself with my phone charger cord. Had too be restrained all day..
This morning, I even kicked off!
I'm refusing my NG tube and have just got a. Ng in anf fluids, after 3 days.. Having no feed though..
My ex support workers kept pissing me off and suggesting FND, it's not FND! I'm not making this up!

Okay so I failed too write all off this down and my mind is blank, plus my head feels all foggy!

Anyway. Will email you what I've written soo far!

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
@horselover7216

Hi.
I have a mystery illness and I'm loosing more and more energy every day and I'm battling with the doctors on getting more expensive tests done.
I'm loosing hope and very suicidal and I think three? Days ago (memory is none existant and my brain is just blank and fuzzy) I tried strangling myself with my phone charger cord. Had too be restrained all day..
This morning, I even kicked off!
I'm refusing my NG tube and have just got a. Ng in anf fluids, after 3 days.. Having no feed though..
My ex support workers kept pissing me off and suggesting FND, it's not FND! I'm not making this up!

Okay so I failed too write all off this down and my mind is blank, plus my head feels all foggy!

Anyway. Will email you what I've written soo far!

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 – first of all, I'm glad that you didn't succeed in your attempt to end your life and that you are still alive.

I'm glad you reached out to Mayo Clinic Connect. Though we are not doctors and can't offer a diagnosis as this is a patient to-patient support site, there may be some members on this site who'd have some thoughts for you as you try and sort out all your symptoms and what the doctors are telling you, especially whether at CT scan might add value and whether your condition could be mitochondrial. Please meet @predictable @jenniferhunter @imallears @rarelybees2889 @finnie @peach414144, who may have some input on your symptoms and also in working with your doctors to come to some answers.

@horselover7216 – how are you doing right now? Are you feeling safe?

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@lisalucier

@horselover7216 – first of all, I'm glad that you didn't succeed in your attempt to end your life and that you are still alive.

I'm glad you reached out to Mayo Clinic Connect. Though we are not doctors and can't offer a diagnosis as this is a patient to-patient support site, there may be some members on this site who'd have some thoughts for you as you try and sort out all your symptoms and what the doctors are telling you, especially whether at CT scan might add value and whether your condition could be mitochondrial. Please meet @predictable @jenniferhunter @imallears @rarelybees2889 @finnie @peach414144, who may have some input on your symptoms and also in working with your doctors to come to some answers.

@horselover7216 – how are you doing right now? Are you feeling safe?

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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 😑

I'm desperate now 😭
Any ideas?

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My advocate told me that I didn't have encephalitis because I'm too conscious. This angered me because I'm not very conscious. I force myself too speak too him and it's hard!

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@horselover7216

My advocate told me that I didn't have encephalitis because I'm too conscious. This angered me because I'm not very conscious. I force myself too speak too him and it's hard!

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@horselover7216 – if you are not feeding through the tube, are you now eating regular solids, etc.?

I thought this thread on starting with a new specialist might be of interest to you and give you some ideas for interacting with your advocate/medical team https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/.

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