Monday - GP Dr S

Went to the yesterday after talking with her on the phone on Friday about the pain in my leg.

She said that most of the symptoms sound suggestive of something a 70 year old would have but its not likely that someone my age would get things like that. I think by now that we've assertained this is not normal for someone my age but it is happening.

She did however pick up on some things:
-Hyperreflex in the left leg and mobility problems in the toes.
-Skin not returning to the correct colour soon enough.
-Cold limbs
-Pulse is slower in the leg.

Yesterday I had intermittent facial droop, pains in the leg, shortness of breath and the jolts of gasping for air. Chest symptoms still worsen on laying down yet it seems to be more consistent that I get the facial droop after standing up and doing something active. Still getting the waves of a horrible feeling going down my body before the chest jolt.

Judging by the previous episodes (this is only a guess) they are worse on days that I've tried to do something more active than sitting down all day.

Today I have Mr ENT, should be interesting.

Sunday

Today hasn't been overly eventful.

Same glurgly short of breath feeling and leg pain throughout the day. What's different though is that my mouth seems to pull/droop when I stand up or move about. In one instance I managed to get my face back to normal by facing far over to the right. I feel the movement in my throat again.

The crappy thing is still happening with my breathing and that scares me.

Both letters have been written to D**. One to request the records and the other to as for clarification on the discharge letters.

14.. Perhaps.

After the silliness of last night I managed to get a few hours sleep. The family came round today which I was so happy about, was lovely to finally see them after so long. However it was a little sad that my neice has taken to calling me my other sisters name as I haven't seen her in so long. I wasn't really that active today but wandered about in the house a bit.

At about 4pm they left to go back home and my face twinged and pulled to the left again. I started to feel really rubbish and my heart/chest felt quite strained so I thought it would be best to go to sleep for a while. Woke up at 9pm and things seemed okay until I stood up.

Seems conisitent now that I'm really cold, my leg (around the knee) goes red and hurts, chest feels girgly and strained, shallow breathing, headrush, face droop/pull (again).. I find it hard to put into words.

I wish someone would fix me.

12...13?

I really don't want to be writing this right now but I guess if I don't I will forget to later.

Seems there were two tonight.. Well, if I'm basing around face droop moments. I'll have to check my Evernote to see when it all started. Oh yes, well aside from the leg pain last night it's been odd all day long.. but every day is odd. Never quite right. Tonight has been terrifying though although the first bit wasn't so bad. I think it was about 6:45,pm we'd just finished watching The Chase on TV and I began feeling tight, nervy pains around my head.. like my skin was tightening. Then goose bumps down one side of my body.. I'm so rubbish at describing things.. My head then went really hot (rest of body cold) and felt really, erm, pressured. Then the mouth and tongue drooped/perma-cramped (not painful) to the side. That lasted for a good few hours.. I think until about 8:30pm. Strange thing happened though when I got up and bent down to put something on the floor.. got a huge shock in my shoulder, neck and face which physically made me jump.

I tried to come up here to do some stuff on the PC but the screen just made me feel sick so printed photos for a little bit until 10:50pm'ish when I noticed my knee was feeling hot again..like someone had sprayed deep heat on it. I looked and it was a little red over the knee and just above, my heart was also hammering at the time.. but usually is now so I guess that doesn't matter. Went back to the living room to sit down then my chest went all funny and it was horrible.. utterly horrible. I'm more scared tonight than I've been the entire time. I know that's stupid and won't help things but I can't help it. I'm trying to stay calm and just think I need to be brave. It's like these big waves of a horrible feeling coming over my body and feels for a moment like someones taken all the air out of you and you can't breathe.. then a big gasp in for air. It happened again, and again with pain in my back and I'm really sure there is some feeling of something moving across or up the back of my throat because when I feel it, it's uncomfortable and I loose my voice. My chest is kinda..rumbling. Feels like the left side of my rib has lots of little bubbles in it that kinda, vibrate. There was some sharp pain under where my left shoulder-blade is on my back too for some moments. This night is the worst it has been in terms of the trouble with breathing and that moment of utter dread when you feel you can't breathe or ..well I don't know. It was a 'crap I'm gonna die' moment. My face drooped again at 1.40am so I was hoping that was the end of it but sadly the leg has gone reddish pink again and the pain above the knee comes and goes. I'm so so so tired, my chest feels like rubbish and I have a manky taste in my mouth.

What can I do...? I can't go to my A&E in Dartford. I did specifically ask them the last time I was there and the two Drs at D** told me to contact my GP as they've done what they could. I did speak to a GP today and she was really helpful, sympathetic and..dare I say it.. interested? Maybe thats not the right word but she listened and tried to at least think of what could be causing this, which was a relief. Luckily she seemed to think the discharge letters from D** weren't making sense and clearly they haven't made the effort to find out what is causing all of this.

I still can't believe D** has left me in this state with no results of vascular screen, no follow up echo (which we've done privately now anyway), no blood pressure testing as they specified in the medical notes and no opthomology appointment. Thank god for my parents having private health cover else I think the journey would be a lot bleaker.

Fingers crossed. I've never ever looked forward to the daytime hours more. Least things seem calmer then.

Leg... again.

Still hurting when I stand up just above the knee, down the side bit ish. Barely slept, for some reason I'm really worried, silly silly me. I know I shouldn't and it's probably nothing to worry about at all.

Spoke to Dr C secretary just now to clarify my email about the contrasts used in the scan. Mentioned the leg to her and she said if I was worried to contact someone... My GP isn't there but finally decided to call them anyway just to check.. It's stupid I know.. I'm being a massive worrier but I feel better to have called and got that out the way. Just for someone to say 'there's nothing to worry about' will make things better, I'm sure!

Silly me :/

Faaack, knee is warm, red and blotchy!

Dr F

Today was my echocardiogram appointment. All went okay and the monitor tests were normal, which is a big relief. They will be doing another scan to determine whether there is a hole in the heart though as I think they couldn't see it on the screen well enough.

What's worrying me though is my legs...specifically my left at the moment. Each attack has happened on a day when I have tried to be more active than normal and using ..well.. my legs. At the moment I have a lot of pain just above my knee and feel quite short of breath (as usual) - as in, somethings kind of pushing it out. On standing up, it hurts even more and I'm still having some wierd circulation thing going on with cold hands and feet. I wake up in the night sometimes and can't feel a few fingers. I don't really know what to do about it but I guess there is nothing I can do at the moment and worrying won't help!

Dr B

Dr B's secretary called this morning as she had a cancellation for Monday and Dr B needed to finish his 'assessment'. I explained that I am in the process of having physical tests done and that I was not able to come on Monday morning anyway due to other appointments

Unfortunately Dr B arrived 40 minutes after the appointment time and I had to attend an emergency hospital appointment which was made earlier in the day due to worsening attacks. The distance is a problem and has already been discussed with Dr B during the last consultation as I cannot force my father to take yet more time off work for an appointment that seems to have no interest in helping my physical situation. I told him that I could only come to Sevenoaks when I was able to drive there myself so I am a little confused why his secretary phoned to ask me to go there.

The consultation last week lasted for about 30 minutes once he had arrived and the focus of the appointment seemed to be about my family and how old they are, what they did, rather than my current, rather alarming, symptoms. When he arrived, we had shown him a couple of recordings and photos taken during a couple of the episodes and explained that the situation and consistency of the attacks had worsened yet I did not feel i could go to D** A&E so we remain at home. He was rather persistent in knowing what I thought it was, having said that I was waiting on tests he then asked again. I'm not sure if the aim of this was to gain a self diagnosis but I am unsure how I can guess at my current condition without having any current test results or the appropriate consultants advice to go on. He did seem interested from the point of hypermobility but the majority of the time was spent asking about my life rather than the situation I was currently in.

There was no mention of further diagnostic tests yet he said his role was to determine if the matter was 'organic' or not. I'm not sure how someone does that without being able to rule things out through diagnostic tests. I have received no more appointments or diagnostic tests through from D** since my first discharge and the last scan I had was after the second attack. No investigations have been done in the mean time.

The aftercare from D** seems to be a psychiatrist and a physiotherapist. The physiotherapist does not know what direction to take as the attacks happen so frequently and we are awaiting the results of private tests and consultations. The psychiatrist is unable to make his initial diagnosis based on a discussion and nothing further can be done until I am able to travel to Sevenoaks.

Worry..

I know I shouldn't and it can't do me any good but thats the way I feel, and unlike the Drs seem to think, I can recognise when I am feeling anxious or worried.. and that time has been tonight. I'm getting nervy twinges in my face and really sharp, intermittent pains in a few parts of my legs. I wish I could at least have an idea what is causing all this then I wouldn't be worried that I could conk out at any given moment. I'm assuming that I had all that contrast wash round me today and if there had been any problem, something would have been picked up. My stupid body.. I want it to work better so that I can get out of this hole of poorliness and actually live my life.

Appointments!

Phew! Dr F secretary has called and arranged for him to visit tomorrow to fit the monitor at about 2pm. The next day I'll have the ultrasound (7:45pm) and consultation (8:45) - both at S*.

Must remember to find the directions and send them to her.

Blood, MRI & CT

Today I had the blood tests, of which there were many! Following on from those I went for the MRI (no contrast) and the CT (warm contrast). I'm a little confused though as I'm sure I was told it wouldn't be the warm contrast and the CT would come first, then I could eat and have the MRI afterwards. Oh well, maybe it's just there are so many things going on something got muddled.

After both the scans were done the blood taking nurse came back as she had been called from the lab and asked to take 4 vials more. Hopefully they won't be the fasting tests as I had a sugary drink and a hot chocolate after the first lot of blood tests as I thought I wouldn't be having any more. Just have to wait and see what comes of this.

Update

I think something is starting. My chest is feeling odd and it feels like cold air is coming up my throat.

I just had a shower and noticed something strange. When I looked down my knees were kind of purple with salmon pink blotches all over them. When I got out of the shower and came upstairs and looked at my legs again (while standing) the blotches were still there but my feet were white. My neck and parts of my face were also noticably pale and there were some darker pink patches on my face.

My neck feels horrible. Scans tomorrow, I wonder if I might be able to get them to check my legs. I need to be careful though, it's so easy just to notice a billion things that are slightly wrong.

Starting to feel a bit ill, think its time to go to bed.

Update

Nothing too eventful tonight so far, chest feels a bit tight and breathing feels a bit strange but it's not really as significant as the other things going on.

Finally scanned all the medical documents and have put them into Evernote for indexing.

D Phonecall

SC has called from D**,

It was a rather stressful phonecall and I already feel my heart banging and my face feels really hot. She tried to explain the hospitals position as far as she could but unfortunately only had the discharge letters to go by and no other medical documentation. She only agreed that the vasculitic screen was ambiguous but strongly fought against the confusion with the echocardiogram and stated that there was no way that the structure of the sentence could be the source of any confusion.

I've explained to her that as a result of the treatment I recieved from D** I will not be calling an abulance which would take me to D** regardless of the severity of the attack as it was felt there was no interest from D** doctors to investigate this further. She did say that I shouldn't feel that way and it was wrong to put myself at personal risk, however I do not trust these people or believe they wish to do anything further to help me. I do not believe any further communication via telephone would be of any use.

List of Health Episodes (more notes)

Previous to these attacks, a feeling of a lump in my throat and hoarse voice was present since September 2011 and entire loss of voice from mid Decemeber until Thrombolysis drug was introoduced.

Saturday 21st January – Attack 1 - About 6pm (home>ambulance – admitted ward DVH)

Shaking begins in hand, followed by facial numbness and strange feeling in head, neck and right shoulder. Dizziness increases and collapse in hallway, losing mobility in right side. Ambulance called and admitted to DVH with ‘CVA’ symptoms to right side. Hot and cold flushes over brain, drooped face, blurred vision, loss of right side limbs.

Neurological consultant from Medway/Maidstone (Mr Nolan?) was brought in via webcam for assessment and decided to treat it as a stroke attack and that the best course of action was Thrombolysis. During administration of Thrombolysis drug, movement is felt along the back of throat and symptoms fluctuate between 'normal' and 'stroke' also with clear voice then no voice. A short while after complete injection of Alteplase, symptoms were dramatically improved with the voice coming and going irregularly along with vision being blurred.

Any of the doctors who witnessed the Thrombolysis were not seen again during any time spent at the hospital. At this point I could now lift both arms. Leg weakness still present but can now lift up from the bed. Admitted to stroke ward. On drip for low blood pressure and remain in bed for 3 days.

Sunday 22nd January – Attack 2 – 6pm (while in hospital - DVH)

At about 6pm, both ears go cold strange feeling in head and quickly relapse into stroke like symptoms - whole of lower face numb and slumped to the left, loss of mobility is now prominent on left side limbs. After about an half an hour symptoms improve yet face alternates between slump and slurred/no voice to feeling and normal voice - 15sec intervals. CT done: no bleed. No scan during hospitalisation done with contrast.

Second attack not mentioned or documented in DVH discharge forms.

Monday 23rd January (on ward)

Face slumped for night and half the day and returns to normal in the early evening. Drooped face and slurred speech occur again after attempted walk down hall with assistance of Zimmerframe.

Thursday 26th January (day 5 on ward) - Discharged from DVH

I was told for three days I had a stroke and positive reaction to Thrombolysis. Forth day told no stroke by a new doctor, then later that day told it was a functional stroke and that Thrombolysis had not worked and produced no result. On asking what A&E had written about the Thrombolysis, I was told by the doctor that the A&E notes were not in the folder.

Day 5 – Visit from new consultant. Told there was no stroke and likely it was Anxiety, with the positive reaction to Thrombolysis attributed to placebo effect however this doctor had only seen me 5 days after the attack and was not present during or after any attack and the Thrombolysis. Neck and voice issues were mentioned and I was told this was no significance. The discharge letter is inaccurate and diagnosis was made on the basis of incomplete information which will be resolved at a later date.

Friday 27th January - Attack 3 – 8pm (home>ambulance – Admitted ward DVH)

After walking a greater distance with assistance of a walking stick, vision worsens, lights bright, hot and cold flushes on brain and waves of nausea come and go. Voice loss again, only able to talk if chin is to right shoulder. About 1 hour later, hot/cold flushes continue, sensation of bubbles in chest and strain. Face slumps, confusion and slurring speech. Electric shocks in right cheek. Limbs do not weaken.

Ambulance called, admitted to DVH A&E and back onto the stroke ward. Hyper-reflex in left arm noted and double vision to the upper left. Mentioned feeling problems in neck yet told that symptoms to not correlate to anything in the neck.

Tuesday 31st January - Discharged from DVH

The discharge letter is, again, inaccurate and contradicts the earlier version. The information is confused and innacurate. During the hospital stay I was not consistently seen or diagnosed by any doctor who was whiteness to any of the previous attacks. It even lists a diagnosis made by a doctor I have not consciously seen. Previously, each ward doctor arrived telling me that I suffered with migraines, which I don't - I had previously (2007) been seen for headaches and migraines but these were later found out to be the result of the monthly pill – which on each trial has been discontinued for this reason.

On day of discharge, chest pain, increased heartbeat and low blood pressure was noted from both the evening and morning and were mentioned by a nurse to the doctor before discharge, however this was taken as no significance. I was advised to 'walk more' by the doctor – yet that seemed to be what initiated the third attack. I had remained in bed only due to chest pains, feeling sick, tired and dizzy.

Monday 6th February – Attack 4 – 9am (home>car to hospital>home)

Woke up with drooped/cramped face, chest pains on left side and intermittent pains running down left arm mainly near elbow and wrist joint. Breathing becomes difficult – feeling of not taking in enough air. Light headed and dizzy. Waves of nausea.

DVH – Blood tests and 10sec ECG done. Nothing abnormal apart for high pulse and low blood pressure (120bpm – 105/49). Discharged. On trying to get myself back to the entrance hall, became short of breath, felt pressure in my head then collapsed, losing partial mobility my legs. Ambulance team in hall came to assist but as A&E had only just said they could do nothing more, I refused to go back there.

Saturday 11th February – Attack 5 – 8pm (home)

Thumping heart, more sensitive to light and sound, start to feel waves of nausea. Strange hot feeling in right side of head – face goes very red. Strange 'tickly' feeling in side of head then one point of pain. Intermittent pain in various places in arms and legs. Suddenly feel very cold, shivering and shaking. Very very cold in left side – hand goes white. Chest feels painful and strained. Loss of movement in toes or ability to raise leg from the ground. On standing left side is weak – difficult to walk, sharp pain in left knee. Flush of hot, then face turns red again. About 30 minutes later it gets harder to think and talk. Tongue slumps to the left as does the face. Lasts about 4 hours. Awake until about 5pm – on falling asleep get a pain in my chest then jolt up gasping for air.

Ongoing symptoms (worsen at night):

• Lump in throat feeling. Unable to talk with head to the left and voice clear when turned to the right.
• Strain in chest. Consistently fast heart beat and low blood pressure. Head rush and dizziness. Difficult to think/remember sometimes.
• Numb/un-sensitive patches appear after each attack, now on face, neck, lower back and legs. Lower body less sensitive to temperature.
• Cold hands and colds feet. Feet remain almost white in the bath for 10+ mins, very slow to warm.
• Head rush/dizzy on standing up.
• Small infrequent electric shocks in right cheek - only last few days or with the last 3 attacks when face slumps.

• Weakness down left side of body and irregular face droop. Worsens during each attack but physiotherapy assists in gaining back movement.
• Intermittent small sharp pain in various points of the body close to joints; elbow, knee, wrist, hip, ankle, toe.
• Intermittent poor vision, like the focussing of a camera lens. Blurred vision and sensitivity to light and sound seem to precede each 'stroke like' attack.
• Double vision to the right - only occurred third attack.
• After 4th attack - Pain in my chest then jolt up gasping for air on falling asleep continuously throughout the night. Very tired.

Email #2

Thank you very much for forwarding these letters to me.

As mentioned in my phone call, the only copies of the NSH discharge letter were with Mr E. During the consultation I emphasised that the information on these letters were incorrect.

I wish to know how and why the NHS discharge letters were forwarded to Dr F and whether they are in the batch of 'clinic letters' going to the other consultants. If so, have the amendments to the original letter been included?

Mr F has questioned the necessity of having a heart ultrasound privately when it has been done on the NHS, however this scan has not been done at any point. I have called the secretaries of Dr C and Dr F to ensure they are up to date.

Kind regards,

Inaccurate Letter: Email #1

This morning I have received a copy of Mr E consultation letter dated 3 February 2012. On reading the letter, I have noticed some significant inaccuracies in the information from the consultation. I would be very grateful if you would please amend the letter to a more accurate representation which I will note below. I believe it is extremely important to prevent yet more inaccurate notes going onto my medical file which, in turn may make it more difficult for another doctor in the future to make an accurate diagnosis or request appropriate investigations. A copy of this email will also be forwarded to my GP.

"Thanks very much for referring [patient] who had a difficult time over the last 4-5 months with vague neurological symptoms"

There were no neurological symptoms in September, only the hoarse voice, lump in throat and evening cough. The voice disappeared entirely on the 11th December and neurological symptoms were initiated by an 'NIHSS 9 stroke event' (confirmed by D**) on the 21st of January of which there have been five more similar attacks.

"..with no firm diagnosis of an organic lesion and the diagnosis, as [patient]said, was made of functional stroke or functional neurological manifestation.

There have been no investigations into an organic lesion. The only MRI/CT scans were performed (without contrast) to confirm no brain bleed (22nd Jan), no scans have been performed after the first two episodes of which there have been six. The diagnosis of 'functional stroke' as written on the DV discharge form was made by a 'Dr Bd' who, at any point during time in DV I had not seen as he is based in S**.

"An echocardiogram, opthamology appointment as an outpatient and vasculitic screen were done, but the results were not available on discharge and  these are not available to me now."

I have no date for an opthamology appointment or any information relating to it. Although I have been told there has been a vasculitic screen, on further admissions to D** the results were still unavailable. An echocardiogram has not been done by D**. The only exploratory scan that has been performed is that of the one requested by me to Mr E.

As explained during my consultation with Mr E, unfortunately the discharge letters from D** contain contradictory events and inaccurate information which will be resolved at a later date. I feel it is important that the inaccurate information in those discharge letters does not encroach further into my medical records.

I would be grateful if would you could send a copy of the amended letter onto myself and my GP surgery.

Please would you also be able to send a copy of the ultrasound and report by Dr Bd.

Thank you very much for your time.

Kind regards,

Letters!

Oh my goodness, this morning has not started out well.

I've recieved a letter from the secretary of my cardiologist. He's said that he's read the previous discharge letters and there appears to be a scan and if it's normal then they don't need to do another one.

There was never a scan.

These original discharge letters from the hospital seem to be causing so many problems. I've called up both the secretaries and told them to ensure the doctors know the information written down is incorrect. Have also phoned the hospital to get an application form for medical notes, although I'm yet to recieve that in my email - it could take up to 40 days. After talking with the complaints department, they are asking a matron in charge of adult medicine to call me back. In the mean time I need to get the letter done and sent.

This has got to be a joke. It's amazing the damage a couple of lazy doctors can do.

Number...10?11?

Another scary night!

Earlier today my sister had come to visit and we braved having a wander around Bluewater. At the time it was slightly tiring and my chest was feeling 'funny' or 'tight' for most of the trip, I'd not been out, aside from hospital visits, in such a long time and had missed seeing my sister so much. I think there has only been one other trip out to eat since the first attack.

It all began at about 5:30pm. I'd been telling my sister about the way I take pictures and we were sat in my room quietly editing a few shots from our phones.  I'd suddenly got some stomach cramps, went to the toilet and on coming back into the room I felt something was wrong. It was as if someone had turned my thoughts off, it was so quiet, I could hear my sister talking but I couldn't really formulate any type of response. Waves of nausea became apparent and so I grabbed the bin.. just to be safe. I started to get the familiar small pulsing pain in the one spot on the side of my head. For some reason a couple of tears came from my eyes, but I was not crying! The nerves in my face seemed to start pulling and the bubbling in my chest started along with the 'feeling' of movement through my neck and up into my head. The numbness/loss of sensitivity in my cheeks has seemingly spread to all over my face, except for around my eyes and nose. Breathing was once again feeling...wrong. The closest thing I can describe this as is if you are trying to drink a fizzy drink through a straw with a hole in it. I opened my mouth to speak to my sister but the words just wouldn't come out. My face wasn't drooped, yet, but all my words were slow and slurred. Got up and the legs, once again, had seemingly decided to not really co-operate, however, we shifted base to downstairs so that I was in the room with my parents.

It's horrible to sit there and put your family through this, it really is. It's only afterwards the guilt hits though. It makes me sad that I can't fix things, I can't control it and no one has seemed all that bothered that this is happening to someone in their mid twenties, except the most recent doctor.

Anyway, that's going off on a bit of a tangent. The symptoms worsened a little more with my whole left side turning into dead weight and I sort of slumped to the left in the chair and just turned into a zombie for a while, unable to form sentences or move. After a few hours it seemed to be over and I was glad this episode had not been worse. If anything, it was closer to resembling the initial attack than all the others but I managed to get back on my feet and wobble about, trying to walk.

Later this evening my heart began to thump really really fast after I'd come back up to my bedroom. It was alright until the breathing once again felt.. wrong. It's so hard to describe all these feelings inside.. all are strange and I feel its so important to convey the feeling with the correct word but in my case, I seem to fail at it rather well!

Back downstairs to check my blood pressure - 129/76 120bpm (x3). No idea what the first numbers mean but all that fast thumping while sitting down didn't feel right at all. Again, the nausea came and then more nerve twitches, intermittent loss of voice and an intense dizziness. This is when it got..worrying. I literally had no control over what was happening inside me. Breathing was causing horrible feelings in my chest and what I assume to be my heart. I suppose there is less of a mental panic now though, it has happened so many times now that I hope it will not cause the worst to happen. Eventually the facial droop came which was a welcome relief as it seems to signify the tail end of an episode. I can only keep my fingers crossed and hope that two episodes today will mean none tomorrow!

I'm too tired to write more now. Although, It doesn't really get that much more exciting!

Introduction - The confusion of stroke?

As I plant the brass end of the rather fancy walking stick in the crevices between the stone tiles of the kitchen, I push once again to force my legs into motion. The left, thus far, seems to be reluctant to resemble anything less than a bag of sand but slowly I know it will catch up with the right. Turning, I grab hold of the kitchen cabinets to steady myself and balance the walking stick in the corner where the joins meet at a right angle. Using my stronger right arm I wrenched the metal handle of the concealed dishwasher and balance myself in a position where I can slowly start to put some of the cutlery away in some vain attempt to make my parents evening just a tiny bit less hassle. I feel like I’m the cheap car that no matter how many times you take it to the mechanics, it will just never run properly. I leave stress, worry, anger, sadness in my wake and every time I finally yank myself over one hurdle, the next one springs up and hits me full on in the face.

Earlier that morning I had awoken from a vivid dream in which I had another attack. Part way through I woke up at what I assumed was an early hour of the morning. When I don’t just doze off again immediately I know something is wrong. It seems my body’s way of saying ‘stay up something’s not right!’, as in the past it has always been the case - even for something small like an upset tummy. My attempts to shift about and shut my eyes tight failed. My chest was feeling as if something was sitting on it and air just felt like it was lacking something. Breathing became more of a thought process rather than am automatic function. As I lifted my head I could feel something wasn’t right, my chest was banging, and once again my mouth was drooped.

When I was younger I had never imagined at 26 years old that I would be hobbling round my parents house with a walking stick needing help and a certain amount of supervision. I never thought ahead on how many operations I would have, consultants I would see, how many needless diagnostic and invasive procedures I would undergo and the cocktail of prescription drugs I would be needlessly fed.

My greatest surprise came today on being discharged from A&E. The utter hopelessness I felt at my treatment and the medical system as a whole. Never before would I have thought that on clambering my way into the entrance from the A&E department that I would be terrified of an ambulance crew coming towards me in fear that they might take me back in there. Not because I had some form of horrible painful treatment awaiting me or fear of hospitals. My fear was purely based on the fact that they would not help me and I had lost any trust or confidence in them and the system they cling to.

The thought of going back in there scared me so much because these so called ‘clever Doctors’ do not seem to have the capacity to question the integrity or accuracy of the information on their system or passed on by word of mouth between colleagues. I used to think that Doctors were intelligent, caring and special people that wanted to help others afterall, they have such a great responsibility over the lives of others. Over the past few weeks however, my outlook has been altered. Making diagnosis’ based on poor or false information and believing it over the patient purely because a ‘Doctor’ wrote it indescribably unfair. It has become clear that some Doctors or ‘medical professionals’ belong to some form of silly boys club that trains you to patronise your patients, neglect to listen to what they say and close their ears to anything that might be an educated suggestion by the patient. Believing the patient has any sort of intelligence is left at the table prior to even doing observations. Any form of suggestions are immediately thrown out, as patients researching their symptoms in a vain effort to find answers is not the done thing and will only earn you some from of unexplainable psychological condition that, you can be sure, will never result in anything but anti-depressants or some Valium based drug.

When in doubt, blame anxiety. This seems to be a continuing theme with the medical professionals I have seen when the odd scan doesn’t show up anything of interest to them.

Everyone can look anxious if you want them to. Or perhaps they are upset because they are in pain and ill and no one is actually helping them? No, surely not. If you are young and have something rare that doesn’t show up in a blood test, you are of no interest in this neck of the woods.

Perhaps trying to fight your own corner will result in you questioning  your own mentality anyway.  I guess that is partially why I have decided to write this, because at the moment I’m not really sure where this lies with me. Am I creating a world of pain and hospitals for myself or can some people just not bother to do their jobs and force you into a state of mind that makes you question your mentality? Labelling someone with a nothingness is far easier it seems. My fear here is the loss of function in my body and in the roulette wheel of fate, what will break or be damaged next? As far as I can tell from this, it’s acceptable for a 26 year old to have (currently) about 10 stroke like attacks, collapse twice, pain in the chest and arm and loss of proper function in various parts of the body that vary in severity with each ‘attack’.

What I have experienced recently, regardless of the underlying illness or condition, is so profoundly wrong and I also feel it is wrong that any person should fear and actively refuse to go back to their A&E department or hospital due to prior experiences. This is partly the reason why I now believe that it is important to document all of this. The other being that I hope another person reading this will find some sort of support or strength from it. It's far too easy to doubt yourself, get fobbed off by people and put your trust in the wrong people.

The initial damage has been done, the words are set in stone and all further cracks spider down from that stone chip. Although these words might seem harsh with little explanation so far, hopefully it will all become clear in the end, I hope!

My trail of health, hospital and doctor nonsense does not only encompass my current predicament, it runs far further into my past than I would ever wish.. far too far. Luckily I have the most wonderful loving family, friends and a supportive, trusting GP.

You are never truly alone. Hope.