Mystery illness. Bed bound and loosing hope
 

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. [emoji58]
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.
Also (edit : 23rd of February 2020)
Right now I'm really suffering.
I can no longer feel pain or emotions, yet with s flick off a switch, I'm angry or crying and i have no idea why. Its like i don't even recognize myself. My hands and feel are numb too.
My mind is blank and my short term memory is getting worse.
Four days ago, I had too have oxygen for a while as my sats were 93. I felt feverish and just not right; that morning i woke up too extreme virtigo, where it felt like i was on a rollercoaster.
Later, i had a full on panic attack where i was shaking and crying. I felt these weird feelings threw my body and that caused it.
Since then i randomly shake (like shiver) and I've also become mute and not very responsive. (For example, I'm now laying in a wet bed and can't even tell my 1-1)

The neurologist has ordered lots of tests and I'm told that some have come back but its up too him too tell me the results (i still haven't seen him)
Doctors did tests too check for things like lupus and some have come back negative.
The rhumotologist did a test and said that there was nothing concerning.
Some blood tests have gone too london.
Yesterday and today, they've tried and so far failed too get bloods from me too test the inflammatory markers, a uti and a respiratory infection (all suspected)

I'm not longer on dihydrocodeine, oramorth and zopiclone, im on melatonin; still not slept though.

I also have a weird lump on the palm of my left hand.

This email isn't completed as i know struggle too even come up with what too write.
Here it is though.

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..? [emoji848] 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.. [emoji24]

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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Hi Megan

Welcome to NeuroTalk :).

I hope that the battery of clinical investigations you have had will shed some light on what is going on.

All the best.

Hi. Thanks for replying!
_
So I'm getting nowhere with my neurologist and i might get my my mum too request another one.

Tonight my pulse was like 117.
A nurse saw it as 115 and a doctor saw it as 100. My dad then put his garmin watch on me and it said 117. A bit much for just laying down!

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CSF leak?
 

So very sorry you are going through all this, I can’t even imagine! Have they evaluated you for a CSF leak? A CSF leak can cause some of the symptoms you’ve described. They are very difficult to diagnose. An MRI with and without contrast might show slight brain sag or meningeal enhancement, or might be normal. A CT scan with contrast might show a leak. A blood patch can also be a diagnostic tool. There’s no doubt it’s brain related and I sure hope they get you a competent neurologist that will test and test to find answers!!

Whats a CSF leak?
I've had too normal MRI scans... :|
Thanks for believing me that it's brain related!

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A CSF leak is a Cerebrospinal fluid leak.

As LettingMyLIghtShine suggested, it is a possibility that is certainly worth checking out.

Okay. I will ask my mum to look into it.

What do you guys think about the possibility of PANS?

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Hi there,
PANS or PANDAS is always a possibility if there is an infection connection?

Here is some info that may be helpful:
PANDAS/PANS Archives - ACN Latitudes

Yeah. I get lots of infections. However all autoimmune tests came negative...

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Have they done very specific tests for PANDAS or other PANS markers?

Unless they run the correct titres, for example for specific strep antibodies in PANDAS, it can often be missed.

No they haven't. My mum is asking my neurologist on Wednesday. I'm so nervous!!

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Don't be nervous! It's better to know and then be able to treat in the most effective way.
Do show your mom that link I posted for you.
I have many more resources for PANS/Pandas if needed.

Im nervous coz of the already FND diagnosis. And i will.
I've also seen the documentary my kids not crazy. Will show her that too

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Recovery for Mandii’s dad – a spinal CSF leak story | Spinal CSF Leak Foundation

Read this story! There’s lots of others too! This website has more resources in CSF leaks. MRI is normal in 80% of the patients.


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Okay. I will look at it

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It looks like my symptoms, but what about the psychiatric symptoms...

I'm bed bound and desperately trying to find out what's wrong. I have ehlers danlos syndrome (eds) and i have had severe back and head pain for years. I'm constantly having to turn over due to back pain. Also my neck got locked in one position and has been stiff ever since. Often i find that my back wants to lay one way and my neck wants me to lay the other. I also have had severe sickness and have had to be taking anti sickness ever since i got d&v. Ive hit my head several times and have had concussion. I have audit and visual hallucinations and eye sight issues. Dizziness. I have had stuff run down my throat causingvit to feel blocked for years. Sudden behavioral issues/ changes. I now can't even sit up or keep my neck up straight. Now i can't sit up without lower back pain and sickness. Agitation. Numbness in hands and legs. Can't feel pain. Sensitive to light. Memory issues. Panic attacks. Can't feel emotions, yet with a flick of a switch, I'm angry or crying. I have no idea why after. Aggression. Anorexia. Depression. Autism. Virtigo. Brain saps. Not responding to pain meds and i can't have morphine as that doesn't work and makes me sick. Nothing works. Normal mri and blood tests testing for antibodies. Frequent infections. Resistant to most antibiotics now. Also i have constant ringing in my ears. Also I've had a really bad ear infection, where i lost my taste buds and sense of smell. I've lost my taste buds now and sense of smell.
My neurologist has diagnosed me with FND but i disagree!
I'm aware that not all my symptoms are relivent, but i thought I'd add everythinghttps://uploads.tapatalk-cdn.com/202...e6e0b65e94.jpg

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I wrote this

Could i have this? I'm bed bound and desperately trying to find out what's wrong. I have ehlers danlos syndrome (eds) and i have had severe back and head pain for years. I'm constantly having to turn over due to back pain. Also my neck got locked in one position and has been stiff ever since. Often i find that my back wants to lay one way and my neck wants me to lay the other. I also have had severe sickness and have had to be taking anti sickness ever since i got d&v. Ive hit my head several times and have had concussion. I have audit and visual hallucinations and eye sight issues. Dizziness. I have had stuff run down my throat causingvit to feel blocked for years. Sudden behavioral issues/ changes. I now can't even sit up or keep my neck up straight. Now i can't sit up without lower back pain and sickness. Agitation. Numbness in hands and legs. Can't feel pain. Sensitive to light. Memory issues. Panic attacks. Can't feel emotions, yet with a flick of a switch, I'm angry or crying. I have no idea why after. Aggression. Anorexia. Depression. Autism. Virtigo. Brain saps. Not responding to pain meds and i can't have morphine as that doesn't work and makes me sick. Nothing works. Normal mri and blood tests testing for antibodies. Frequent infections. Resistant to most antibiotics now. Also i have constant ringing in my ears. Also I've had a really bad ear infection, where i lost my taste buds and sense of smell. I've lost my taste buds now and sense of smell.
Also, i had urinary problems growing up and found that as soon as i laughed or bounced on my trampoline, I'd end up going. It was very embarrassing and i had to take this little blue tablet to help (can't remember what it was called)
My neurologist has diagnosed me with FND but i disagree!
I'm aware that not all my symptoms are relivent, but i thought I'd add everything

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Hi. So my neurologist unfortunately diagnosed me with FND but i disagree and think its PANS/PANDAS. Keep having random panic attacks and dull aches and im extremely exhausted [emoji42][emoji42]

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Hi Megan,

I'm not very knowledgeable about autoimmune diseases. I have had MS since the late 1970s and try to keep up with developments in that field. It isn't known for certain that MS is an autoimmune disorder.

Anyway it sounds as if you're suffering considerably and I hope that the doctors who are treating you will find some answers that will be helpful soon.

I'm struck by the list of medicines you're taking:

That's a fairly long list. I hope that your doctors have been looking closely at each of them to check for possible adverse effects and drug interactions. Quite often seemingly unexplainable symptoms turn out to be caused by a drug the person is taking--or by a combination of drugs that has triggered a problem.

Im not on oramorth, dihydrocodeine or zopiclone now. Im taking ibuprofen and melatonin instead..

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Hi Horselover.

Functional Neurological Disorder (FND) is very real, especially for those who have it. I know someone who has had FND since she was in 6th grade, she is now 28. This young lady is a friend of my daughter's. Her parents spent thousands of dollars and trips to out of state hospital trying to find a reason for her symptoms. When a Dr. finally gave the diagnosis of FND her parents as well as myself did not believe him. Unfortunately the diagnosis was correct.

You disagree with your diagnosis of FND, however, there would be a good reason for a Neurologist to give such a diagnosis. Working with your Healthcare Professionals to start finding ways to treat your FND could be very beneficial for you. If you continue to fight the diagnosis because you choose not to accept it you continue as you are.

Information about Functional Neurological Disorder:

Welcome - neurosymptoms.org

Symptoms - FND Hope International

I don't believe him. He based it on me not being able to talk sometimes and can others; I'm AUTISTIC and so there's such a thing called SELECTIVE MUTISM! I mean HELLO!

Also he based it on my leg movements. Well i still struggle with that and i DON'T agree!

They could've at least tested for my theory!!

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You sound like there are several issues you may have. The first thing I noticed was how PTSD you sound, maybe I wrong but worth checking out. I went PTSD after stopping Lyrica the withdrawals can be that bad. If you do have some PTSD it will interfere with your ability to properly discern all your symptoms. Good Luck I have been trying for over 6 years to get an appt with a neurologist but when they find out it started with Lyrica the cancel my appt. I have tried in 8 states and they just do not like to deal with the adverse effects, I have referrals from 3 different doctors but still no appt.

Hi. Sorry, it's been so long!
Forgot about taptalk completely =S

Strangely enough, my parents think I have PTSD too..

Will ask to be tested

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Hi Horselover,
I don't know if you're still searching for answers but if you have indeed been diagnosed with Ehlers Danlos syndrome I have a suggestion for what you may be suffering from: cervical cranial instability. It's not uncommon with EDS, about 1 in 15 develop it, and it can cause many of the symptoms you describe. Have a look into it. It's a long shot, but this may be the root of at least some of your problems - and there is an albeit expensive surgery that can fix it. All best, Flex.