Anxiety & Madness

Back up to London today.

This was the trick Dr appointment. The one where my current neurologist says 'oh I'll get a second opinion' (me thinking neurologist) rather than actually telling me 'I don't believe what the last neuropsychologist said, I think it's Anxiety, I'll pass you onto someone who will agree with me'.

I get there, sit down in his office and he looks a nice person to start with. He starts asking me questions and foolishly I didn't bring notes with me as I assumed he would just put them aside like most of the other doctors did. I try to remember bits as well as possible, I show him the thing with the leg raising, sit back down and try to talk through the events. Once he started asking more specific questions he seemed to become quite abrupt and I felt though he either couldn't hear or didn't understand some things that I was saying. When I mentioned one of the hospitals I saw doctors at he didn't know what that was and asked if it was a clinic somewhere. He didn't know what Hypermobility was and seemed not to know what Polycystic Ovarian Syndrome, Endometriosis or Chiari is either. This filled me with confidence. He asked about my Father, his work and illness, how old he was. Briefly asked about sisters, mother and what they do. He then sat back and stared at me and made the following points.

• There is no possible physical condition that can cause my symptoms.
• The raising of the legs, movement and pressure on the vein (temple) cannot possibly have any impact on any condition and that is not medically possible.
• The reaction of the thrombolysis was the result of the placebo effect.
• His diagnosis is that this is definitely psychiatric and caused by anxiety.
• The problems with my voice and throat were due to my fathers thyroid problems (which did not occur until long after my first collapse). The whole situation may be related to my fathers poor health prior to my first collapse (My symptoms began in September, fathers in November). Also indicated the anxiety was due to my sisters health problem in February, however, as I told him, I didn't know about this until months later.
• I am judging doctors on the basis of my previous treatment regarding the Endometriosis.  

Apparently I've just met a man that knows everything about medicine and health, literally everything. And apparently if HE talks with Bupa and insists on CBT through them, they will pay. Wow, this man has the power to bend health policies too.

After telling me all this he sits back again, staring at me, watching my reaction. Of course, I am upset and want to throw something at the arrogant prick. He has the nerve to say 'oh I'm sorry this isn't what you were hoping to hear'. I quote "You look crestfallen"..Yeah Mr Arsehat, I was hoping to hear I'm terminally ill.. God, what is wrong with these people? I have a problem and all I want to happen is for someone to take it seriously and take the time to actually look into it. I had HOPE, that is why I'm crestfallen! Because once again I've ended up in the consulting rooms of a sad breed of doctor. Mr Dr-Who-Knows-Everything has spoken and has made a complete medical diagnosis having heard my hashed explanation of what's going on, seen only one referral letter which isn't even accurate, looked at no test results and has performed no examination himself. He was 100% sure that his diagnosis was correct and I need no tests. He told me though that he could quite easily have initiated an attack if he'd had wished to. Right.. Okay.

He states that it's obvious from my reaction that I don't believe his 'diagnosis'.. How can I not? I'm not a sheep. He says (quote) 'Oh no doubt you will go off and find more doctors to do tests' (you patronising prick).. I say no, that I will go back to my GP with his letter and discuss with her what she thinks. He asks me how I will continue, so I reply that I just will and if no one will help then I will just have to learn like this. He says but you can't and again, I say I will have to. He asks me to seriously consider CBT and of course I say I will rule nothing out. I have however attended CBT twice (2009-2010) in the past due to my 'anxiety pain' caused by my brain (which was actually Endometriosis strangling up my organs). In the first case it caused a lot of family upset and nothing but stress, and the second 12 week course made absolutely no difference as the diagnosis of anxiety was wrong to start with. It was interesting and educational however and amazing to see what people went though. Anyway, apparently the previous neuropsychologist I saw back in April '12 who told me it wasn't anxiety was brushed off and his diagnosis was considered wrong or irrelevant even though he's one of the few who actually tried to look into the symptoms.

He links this 'anxiety' and voice issue to both to the stress of my sister and my dad being ill, but unfortunately for him the time frame is all wonky and it doesn't make a lot of sense. Of course I would have been stressed by my dad being in hospital but you COPE and you have to. It's sad but he improved and was home in November. My collapse didn't happen until the end of January. I didn't find out about my sister until months afterwards. I can't help but feel these 'doctors' are grasping for straws and just attaching things to logically fitting life events.

Later at the end I tell him that my I also have a twisted bone in my neck and my neck was arching the wrong way and he did a slight double take. He'd not even bothered to ask about investigations. Yet again, remember there is NO physical problem with me. None at all.

I have never before been sat in a room with such an arrogant, self absorbed prick. I can't think of any nice words to say about a person who thinks they know everything and is so blind and blinkered by their own self importance. Just because you have a title does not make you a genius.

I just don't understand.. I can physically feel in my feet and by touching the area right now the vibrating/bubbling in the veins in my feet as I have them crossed up under me. People I speak with over the phone hear my voice going and say 'stand up!' so that my voice returns. No, I'm not a stuck up, arrogant (this word can't be used enough in this post) doctor who knows everything, but I'm not stupid enough to believe that something you can physically control and initiate is anxiety.

Yet, of course I understand that anxiety can have a huge role to play in illness and yes, maybe I am wrong and all this is due to anxiety. My god I must be super anxious.. like, really! I don't have a problem if it is, I want to be better, I want to be fixed. I fight against this so hard because of the manner in which it gets labelled on you. It's like 'well we don't know so it's anxiety'. If I had accepted that in 2010 I have no idea how damaged my insides would be right now and how much pain I would be in.. It honestly scares me to think that way.
If it really is anxiety though I would have thought that I'd have had at least three attacks today and last night alone based on how annoyed I was then and now. Yet nothing.

I've heard it all before from arrogant, self absorbed, blinkered doctors. I'm so, so sick of it. I guess in a way I should be glad, it gives me more motivation to write this all down in a book.

I just don't know what I'll do next though.

On leaving the appointment I was in tears and I just couldn't stop them, I was furious. It didn't really help that when I turned my phone back on I had a really shitty on there too.. *sigh*

Lights & Letter Fun

It's been so long.

Where to start? Well I had the epilepsy testing. That was... not fun! I was actually quite nervous for that appointment which isn't that much like me. It feels so long ago now it's hard to remember. My brain melts more and more each day I think. I think perhaps that I hate all this stuff so much and then the prospect of then writing about it all is really unpleasant so I put it off. Writing a book might take a few years.

Anyway, back to K hospital. I was convinced nothing would come of it, epilepsy felt so wrong and far fetched. They stuck wires all over my head ans the Dr asked me questions while it was happening. Honestly, its hard enough trying to remember a year's worth of mess and then having someone yanking at your head at the same time. Then they asked me to go lay on the bed thing (I felt like professor X or something) and pulled this big lamp thing close to my face. The Dr then starts recoording and the nurse is typing constantly, recording what's going on in the room. They asked me to close my eyes and flashed a bulb in my face and a certain frequency of pulsing. The flash of the bulb is like a super big bright camera flash. Nothing happened, as I expected. Then they did it a second time and the strangest thing happened. I started to get a cold feeling in my neck, it was really odd. So I mentioned it, then they tried pulsing the light for longer (still eyes closed) and then the feeling was a little more defined and I felt a bit ill and irritated by the light. They then asked me to do some deep breathing while the light was flashing in my face and then I felt it the start of a attack. It was only a little baby one but still, it felt 'triggered' and I felt the left side of my face pull down and my speech went completely slurred (as the tongue goes a bit dead) and the limbs kinda stopped working properly.

In my brain I thought 'oh shit' but then there was slight relief that at least the Dr had actually seen something, and had it recorded. I emphasised this was a baby one and what was strange is that the Dr and nurse seemed to be a lot nicer to me from that point onwards. It's a rare feeling as I feel like a total faker to all the Drs I visit in hope they will fix me. I feel like I shouldn't be wasting their time and there is nothing wrong with me. I guess that's only ...normal? The nurse was quite insistant that I get an appointment with my neurologist as soon as possible and the epilepsy Dr had said the report would be done by the following week. I managed to get an appointment with Dr C for 2 weeks after but on the day his secretary phoned me to say that they still hadn't got the report. By the afternoon it turned out that the epilepsy Dr had emailed Dr C a basic report but the full report hadn't been done. I asked the secretary if it was still worth seeing Dr C and she said 'yes ofcourse' so off I pootled to the hospital.

On entering Dr C's consultation it was pretty clear from the off that he was like 'why are you here again?' or that's the impression I got. He once again stated 'oh great you don't have epilepsy!' and then proceeded to ask me what I thought was causing the attack.. Erm, wait... Who is the Doctor again? Sounding like a fecking broken record he went on to talk about the Neuropsychologist (who had actually looked in detail at the situation and said that it wasn't my brain doing it). I think he is convinced I'm some jibbering wreck and it's easier for him to lable me insane rather than actually dealing with the problem even though I can physically display the build up of voice restricting pressure in my head. So what do all the Dr's do when they don't have a clue? Ohh lets pass her on to someone else. So here, I can go see someone for 'a second opinion' in London. I was under the impression that it was a second opinion to -his-, though when I recieved the letter from the consultation in the post it turns out to be another Neuropsychologis, which he neglected to tell me in the consultation. So basically he's questioning the initial Neuropsycologist's assesment rather than his ability to test or diagnose something that clearly isn't common. I feel like from the first consultation he had decided I was broken in the head and he's never since taken any consultation seriously or had any wish to find out what is actually going on. Back in the consultation I hear him dictate a letter saying 'she has been vascularly exstensively investigated and suffers with black-outs. Erm.. So I say to him, I'm sorry but those points aren't true, I don't black-out when I collapse. His answer, quote 'Oh, it's just a term we use'. You patronising bastard. Is this a joke? He's sat there and raked in an extra £200 for literally doing nothing.

I have a feeling I would be fixed by now if I just had one doctor who could write an accurate letter based on some sort of facts.

More recently I was reffered specifically to Dr W through a different route. I had so much hope for him and in the first consultation he seemed really nice and showed an interest. He stated that he needed more time to look into stuff and would see me again in a few more weeks. He told me in the following appointment that yes I have Reynaud's disease and Hypermobility Syndrome in addition to my other illnesses.

And then I recieved the consultation letter today and once again I'm blinded by how much my hope was misplaced. If I have any mental illness I'm pretty sure that its actually down to people not doing their jobs or just dismissing any hope of fixing whatever is going on.

So.. It was time to write back to people.

I've picked todays letter to get out of the way first so that I don't stress myself over it for too long.

30 October 2012

Dear Dr ***,

Re: *** - Consultation letter 17th October 2012

I seem to be having some difficulty recently in regards to accurate information being recorded on my medical records through consultation letters. This began with DV then Dr E and more recently Dr C. As I mentioned in our consultation last week this included information that was not correct and tests stated as being completed when they were not. This adds considerable stress to the entire situation as I do not understand how a Doctor can plan tests or treat a patient based on inaccurate information.

Unfortunately, on receiving your letter I have once again found that the accuracy of information is somewhat distorted I would like to highlight a few areas I feel need some clarification for my medical records. 

“Your referral I believe was prompted by her development of Raynaud’s syndrome which affects both the hands and the feet and has become pronounced over the last few years.”I would like to clarify that all these symptoms (discolouration etc) did not occur until after the first attack in January 2012. Significant colour changes (white/blue/purple) also take place in my face, legs and arms during/after an attack.

“Earlier this year she had an alarming episode when she was admitted to Darent Valley.”I would like to clarify that I was taken to hospital by ambulance three times during that month with what was thought to be stroke episodes, subsequently I have suffered about 40 similar episodes since with no suggested treatment or assistance. 

“She is not into exercise” As mentioned in our consultation, I do not exercise because increase in heart rate/breathing/physical activity seems to prompt attack. It has nothing to do with not liking exercise. 

“..including a distressing tendency for her voice to come and go which interestingly she is able to control to an extent by pressure on the side of her head or the position of her head.”Perhaps this is interesting but for me this is scary and debilitating. This is a direct physical reaction and yet not being looked into at all.

It seems a logical assumption that if I can regain my voice by pushing on a vain in my head, or lose my voice by raising or crossing my legs, something, somewhere is getting blocked. Yet early letters state I have been ‘extensively investigated vascularly’ this is a tad untrue.

“She is hoping to try and get back to some form of regular employment.”I have been moved to medium rate disability allowance after the entire situation was looked at in detail and my GP cannot sign me back on to work until this situation is stabalised. So I am at a loss of what to do. If there was practical advice in terms of employment options for someone who frequently cannot speak for long periods of time or has regular attacks, I would more than gladly take it.It is a very distressing prospect that someone of my age suffering from attacks, loss of limb mobility and loss of the physical ability to speak is basically told ‘we don’t know’ and passed along to another doctor. 

“I won’t review all her extensive investigations” In our initial consultation you mentioned that as it was a slightly more complicated situation you would need an additional few weeks to gather information and review this before seeing me again. You also indicated that there were tests you would like to do. I took the time to write up a very clear list of tests that had been done, including the results.

It is very disheartening to see in writing that once again I have attended a consultation with a doctor who seemingly hasn’t looked at the whole situation. The result of our last consultation being that you confirmed the Reynaud’s, yet I had to ask for help in terms of medication. You stated I was hypermobile, which I was already aware and runs in our family. Also you took time to go over the Lupus results from back in May which, although appreciated, they had already been explained to me. I was under the impression that these results would assist you in determining other possible causes or a route of investigation to follow. I do fully understand if this is ‘not your area’ however I was referred to you quite specifically because it was thought you could help. 

Once again, I been returned to the GP with no assistance in regards to the voice loss and attacks with the advice of ‘do what you can do make it normal’. I currently have no voice again (1 week continuous), painfully loud tinnitus in my right ear which is preventing sleep and it is physically not possible for me to strap something hard onto the vain on my head to release all this pressure in my neck and head.

I very much hope that this letter is not taken in an aggressive or rude manner as that is not my intention. However I felt it was important that I respond and voice my concerns.Kind regards,

Speech Therapy

My eyes are stinging so much. I feel at the moment I've hit the point where some of the people I care about are just getting bored of me not being well and would just rather replace me with something more convenient. Just been crying and crying. I got a message but I'm not sure I understood it right but something about moving a day I was going to see someone. God, it's making me cry even more just going over it in my brain. I feel so stupid, I hate my body it's so rubbish and busted. I can't seem to do anything at the moment without breaking it further.

On Monday we just went for a short walk around the block - I felt as normal as I can at the moment so throught it was worth a try. As I was walking I was so out of breath and it looked like the floor perspective was all wrong. When I got back I sat down at my PC and suddenly felt very sick, like I was about to vomit. Went all shakey, stood up to look in the mirror and my face looked really pale. So I got my sick bucket and as I was trying to talk to my step mum, my face started to pull to the left and my tongue went with it. I tried to talk and all that came out is a slurred mess. The rest of the day was really scary, I was always out of breath, had burning in my head and I couldn't do anything. So stayed in bed with an audiobook and waited. The feeling of cold in my chest was horrible :( I know its so silly to get scared but I don't know how long to leave it before... well it's not like someone can help anyway. If someone could tell me that this problem is at least safe and its not going to damage my brain and limbs more than it has already I might feel at least a little more comforted. I feel so utterly useless. Just walking round the block and that happens..? The following days I've spent mostly sitting at the desk being immobile. Just going up and down the stairs makes me out of breath, I'm rediculious.

This whole thing is so complicated now. We discovered last Tuesday that if i push the spot on my head that sometimes 'burns' then I can talk normally. When I release it then my voice goes back to being strangulated. The same thing seemed to happen with standing and sitting. Then it would reverse. I just feel so odd inside. Everything feels weak and stupid. At times I would not be able to speak when sitting, then I'd stand up, my voice would come back and my ankles would start to feel numb then the legs go very heavy. Getting more tired and I just don't know where this is going to end.

We had an appointment with a Lupus consultant on Wednesday. They've taken lots of blood and I'll have a follow up next Wednesday. What was worrying is that the Dr there had all the old papers passed on from earlier appointments which already had incorrect information in them.. Why would these have been sent on?!  I didn't think of it at the time but it's so frustrating. I heavily regret not taking in one of my parents as when I got in there I was so overwhelmed with what I needed to tell him I feel that I messed it up. It's so difficult to talk, let alone put forward a case thats been going and not resolved in nearly a year! Seems to me that because medical professionals have a title, other doctors believe anything that's written from them and not question it, regardless of what the patient tells them. This most recent consultant didn't really mention the stuff which I suppose is good so far but if he bases assumptions on innacurate letters then... God I just don't know what the hell to do. I know it's wrong, but part of me wants something to come back positive so at least I can have something to work on and make better. Or at least make it managable so that I'm not having my face go wonky and collapsing randomly. I just want to understand what the hell is going on. I want to go back to work, back to life even. All I do right now is inconvenience people and that's about it. It makes me so so sad. I honestly don't know what I would have done without my parents, they've been so so amazing and it upsets me so much to put them through this. I just can't seem to get out of this hole and no one wants to help.

Today I've had speech therapy. The therapist there was very nice and talked to me about 'false chords' and such. On attempting to do the vocal exercises I became very dizzy and the room started to get very bright. It was getting harder and harder. She said, as there was no diagnosis yet, that she would treat it as if it were a 'functional' disorder (which rang certain alarm bells in my head). However, after a little while my real voice came through yet the feeling of an obstruction/lump grew more prominient. She suggested that might be in relation to something muscular. Then I had my voice, it worked as I knew it does.. Then the sickness came, the burning in my head, the heavy legs, the face pull to the left and my tongue as well. I slurred words to her to explain that this seems to be the trade off for being able to use my voice. At this point she seemed rather shocked, asked me if someone was with me and decided to stop the therapy there. She no longer thought carrying on with therapy such as this would be a good idea due to the reaction it caused. It was nice to see someone concerned, curious and a little shocked. She asked me 'how do you live with this' and I said.. well I have to, because no one is helping me or seems to be the slightest bit interested. Then, she went on to ask me if I would keep her informed of how things go and when they do find out what is wrong, to let her know. There have now been two people who have asked me to do this which is quite a nice thing to hear as it at least shows some interest and willingness to learn. Consltants pass me round like a hot cake, assuming its not their problem but they'll happily take the fees from Bupa. I wonder whether you would get a more accurate referral if fee paying was based on accurate diagnosis and recovery. We've only just seen a private health cover bill where the consultant has charged the company about £300 incorrectly by adding on 'surgery' and 'anasthetic' that were not part of the consultation whatsoever. We only noticed because the bill happened to be queried. Its fairly shocking, I wonder how many little extras are added on bills that the patient never sees? Sick people shouldn't have the extra stress of chasing up doctors and bills. It's just.. appauling. Side tracked there a bit but I feel quite strongly about this. So far I've seen about 10 private consultants this year and not one of them has done anything to actually help with the attacks or prevent them.

NHS hospital washed their hands of it long ago. I am hugely lucky and grateful that I have the luxury of private cover but looking over the past few months, I don't really know how helpful that has been and all I've got from it is hefty dosages of radiation.

It's not a happy day. :(

To keep..

As reference: http://www.londonlupuscentre.co.uk/hughes-syndrome/symptoms/

Sounds an awful lot like the second one down.

Today has been long and, I don't know.. I don't feel sick so I should be happy. I just feel weak, uncomfortable and cold. I seem to have developed an on off switch in my head. There is a specific point on the right side of my head where I feel a slightly bulging vein and sometimes it becomes painful, very specific spot rather than a 'headache'.. I think it also connects to the discomfort i feel at the base of my skull and down the side of my neck. Anyway, today I noticed that if I had my head tilted to the side on a hard wood surface, my voice came back fine. Put my head up and it went again. Then later on when I got the discomfort in my head I pushed on the 'painful' bit. Low and behold, the pressure or stuff released from my neck/back of throat area and I could talk fine, let go and the voice goes. These switches do seem to have a knock on effect to the weakness and heaviness in my legs and other limbs. Certainly seems like it's all connected. My legs have been very painful throughout the day too.. more than usual. Also laying with them raised while laying down is a very bad idea.

I 'spoke' with the Proff at LLC today and probably made a right arse of myself - how do you even begin to describe all this? Basically tried to tell him the situation and that we are very worried it will escalate to something much worse again. So I'll be seeing one of his colleagues next week on Wednesday. I really, desperately hope they can help.

I got a letter in the post today about the KCL 'Activation' appointment, which is booked for the following Wednesday on my birthday. Apparently 2 hours of hyperventilation and flashing lights. Great.. Just how I want to spend my birthday. I will see what the LLC say and hopefully they will help so that I don't have to go through the telemetry stuff.

New Episode

It's been building for days. I've felt it gradually get worse.

Tonight's post might be disjointed as it's very hard for me to type at the moment. Hands aren't pressing the right keys.

Tonight it all got a bit worse. Noticed that on standing up I got my voice back but this resulted in numbness in my ankles. I've made a recording on my phone. Did my blood pressure and pulse. On standing pulse increased and blood pressure dropped. I have a strange feeling in my chest and feel breathless. My arms and hands are shakey. Memory not working, argh!

Started about 6pm.. Whole right side was feeling weak, Electric shocks in right foot and right had, only mild, then voilent hand shaking but could talk. Sat down, felt lump rise and pressure increase up my neck then lost voice again and wave of cold goes down legs. I've recorded this on my phone. When I stand my legs get weak, especially the right. On pressure it shakes voilently. Feet feel stone cold. Right has a tinge of blue/purple colour around the bump on the side. Pains in feet and legs (similar feeling to having injection to wrist) and now sitting at desk, Can feel the lump/pressure in neck but can half talk, memory is slow, right leg aching and breathless. Using walking stick. Don't feel very well at all. On laying down, horrible sensation in chest.

Oh and now I have upset tummy.. and my chest hurts, yey.

Valve Please!

Oh gods the pressure just keeps building! Now, even if I try to whisper my head feels so dizzy. I can't even breathe and whisper! It's getting really uncomfortable and this feels exactly how it did before the January episode. Pushing at my neck or putting my chin to the right doesn't even do anything. So do I start taking asprin in case it is a clot or something or do I leave that until after speech therapy on the 29th?

So what do I do if 'it' happens again? I really don't know.. :( I'm really am scared to go back to DVH.. Urgh! Just the thought of it makes me feel ill.

Pressure!

My head and neck feel like they are being inflated with a footpump! Its so horrible and uncomfortable. My brain feels like its going to pop! Its not a headache.. I can't really call it that So much pressure! If I yawn I get a electric shock in my face. Everything seems very bright. Got a few tingles down my arm. Occasionally feels like someones pouring hot liquid over the inside of my brain and theres this uncomfortable pulling in my neck.. Urgh!

My voice is gone... again. Longer term this time. I lost it for about a week and a half, got it back for one day.. ate an icecream that evening and it went again. Last two days the pressure is so much that it hurts me and makes me so dizzy just to attempt to speak. I can hum, but not speak. I hate this.. I'm getting scared that a repeat of January will happen. I hope not.

Shakey pulsy..

I feel.. all yuck. It's as if my whole body is pulsing and it's really scary. My heart is beating so fast.. I don't know what to do. It feels like everything is trembling inside :(. Kinda, out of breath and I'm only sitting at a desk.

Last night I noticed while I was playing online that I was pressing the wrong buttons with my left hand a lot, then it started to feel heavy and trembly. Then it all got too much so I went to lay down. Then the rushing horrible dropping sensation happened.. like missing the step in dreams.. but it didnt go, it just hung there, horrible. I was so scared. I turned on the light and I was so pale and cold. Yuck!

Malta and other bits..

I made it! Well, mostly. My flight was at 6:30am and because I had to leave the house at about 3am I thought it a better option not to sleep rather than sleep for a couple of hours and then wake up grotty. Usually I am quite 'awake' in the night time although on this occasion I was sleepy by 10am.. great. Drank some sugary things and tried to keep myself awake. The trip to and though Gatwick was alright as long as I sat down for a bit every so often. Then game the plane trip.. oh god it was horrible. I've never felt quite like it on a plane. We'd not even taken off and I started to feel like I was inflating inside. There was all this pressure inside me and my hands and feet started to swell up and get hot. As the plane took off I started to get very scared. It felt like I was going to go pop. The heartbeat in my head was so loud and fast, my chest, arms and feet were hurting and I just didn't know what to do with myself. I closed my eyes and tried to keep as calm as I could. I just remember thinking 'please stop going up, please stop going up'.. There was a moment of panic when I thought I might actually have to get help but then I felt the urge to vomit, the right side of my head went really hot then really cold and I sat as still as I could and grabbed the sick bag. Luckily the flight really isn't that long but it felt longer than it was.. if that makes sense. I remember worrying about how the hell I was going to get home again because there was no way I could take another plane after that journey. Thinking about it now, it's just not possible to go any other way so I have to be brave, grit my teeth and just get it over with. It's doubtful I'm going anywhere near a plane again until this stuff is sorted.

I arrived in Malta exhausted. There was no possible way that I could get any sleep on the plane (as I had previously planned to do). Got the bag and got a taxi to Sliema. Met up with my friends husband at their hotel and then me, him and his daughter walked down to the seafront, which wasn't that far but little tiring as I'm a bit pathetic right now. After lunch we headed back to the hotel to pick up the bags and make for the apartment that they had rented for the week. So, lugging all my stuff with me, we trekked across Sliema in seemingly any direction as they didn't know where the place we were heading was. I tried as hard as I could to keep up but my legs and everything else just felt like it was giving up and I dropped further and further back. Countless streets later we got to the seafront and the tiredness had turned into pain. My feet felt like they were going to burst again and that there were needles stabbing in to various places. My heart was banging, had the feeling of something cold inflating in my neck and then I started feeling the air bubbles. Made it to the curb and that was it, just collapsed in a bit of a heap. This is when my friends realised something wasn't quite right. They turned to help but for a while I couldn't really feel or move my legs. I don't know really if I was thinking at the time.. probably 'oh no'.. I felt more sad though. It's like, if I push myself into doing too much my body just refuses and shuts something down. This time it effected the right side with the arm feeling partially non responsive and the leg was just not working at all. They tried to pull me up but putting any weight on it caused it to shake violently. My friends husband got me to a chair and we sat there for a while. My face then drooped/spasmed on the left and the speech began to slur, like my tongue was just not capable of helping form words. I took my shoes and socks off and my feet were purple and swollen, almost blue in places, it was horrible. Apparently a policeman and some others stopped to call an ambulance but.. well what would that achieve? Only a hefty bill probably. It took about an hour to get back most of the use of the leg but once again I couldn't and still cant bend the toe or move the foot properly. God, it makes me feel so useless. It's like... I try my best to warn people/friends that I have limits and if break them I get very ill. I guess I feel so frustrated and am just screaming inside my own head because people don't understand. They see you look normal from the outside and assume that you have to 'look ill' to 'be ill' but that isn't the case at all. I warn people that things happen if I push too far yet I can't constantly be saying 'oh I can't do this, or that, or the plans have to change' because of me. Especially when you are trying to find the place you are staying and don't know where it is. I don't want to cause people extra hassle. Yet when I try to do things and bad things happen, those people look shocked and ask what the hell is happening and I just want to cry and make them understand.. yet I can't. I hate what people must think of me. Then afterwards I get told not to push myself as it's not worth it. So either I can shut up, not be a pain to people and carry on as 'normal' and be told 'not to overdo it' later, or I can be a massive pain in the bum and have to change all their plans to suit me. It was silly of me to think that I could cope with going so far away at this stage. I don't mean to sound ungrateful at all, I'm very lucky to have the opportunity to come here and spend some time in the warmth. Yet I feel nothing but a burden on the people I am with, I'm in pain most of the time, there's nowhere to hide and rest and it all just makes me feel like rubbish. It's a good experience though, it makes be recognise my boundaries more, be grateful for many things and hopefully help me work out things that I can do instead to at least help myself find a happier situation.

The rest of the stay hasn't been as dramatic as the first day but the tiredness is playing a large role in that, most nights I'm in bed before 9pm. The wake up pain isn't pleasant though. The pleurisy pain is kinda spreading right down my back now too. I came back earlier from Valletta today as I just couldn't cope with walking for miles and miles.. and miles. I'd love to be able to like my friends can, but I just cant. I felt my feet swelling, chest hurting and started getting dizzy so I decided not to push it again.. we were too far from the apartment! So I had a nice burger for lunch and then came back on my own. I hate to say it but I feel a little better on my own as I don't feel so guilty for letting people down or making them change their plans.

On a random other note, something I'm noticing is that I'm not healing, erm, very fast at the moment. I've had a thing on my arm since before V's wedding and it's not really gone down much. There are also two cuts on my fingers that, when my hand goes red and swollen, they have white marks round them. I guess I'm just worrying about everything right now, mainly because my whole life seems to be focused around illness. Oh, voice has been going completely for a few hours each day too. Usually later in the evening.

I went to the GP before coming out here and he suggested taking asprin but we weren't sure if it would interfere with the lupus testing. He was meant to try and phone the professor to find out if I can (as August appointment is a long way off) but I've heard nothing back yet, as far as I know. He was really helpful and quite shocked at how DVH have left things. I showed him some of the photo's of my feet and face and his response was, "And they thought -that- was psychological?" *sigh* I've been signed off until September, pending the investigation into 'mixed connective tissue disease' as he seemed to be more concerned over that.

Not sure what I will do with myself until then.. I guess I better write more letters to the ESA/DLA. I might look into doing some courses, that might be a nice distraction. Maybe first aid.. lol :)

May: Constant symptoms

• Collapse on exertion resulting in loss of mobility mainly in legs (pressure induces violent shaking in limb), slurred speech and facial spasm/droop.
• Loss of movement in left toe (continuous).
• Painful swelling in hands and feet.
• Poor circulation to feet.
• Pressure in head & headaches.
• Lack of coordination & dizziness.
• Feeling of dropping (at night).
• Very fast heartbeat, chest pains. 
• Sharp pains in feet and hands.
• Loss of voice for a few hours a day.
• Pleurisy type pains in chest/ribs and back.

The night.

Or should I say morning? It's just past 4am and I'm back to being propped up in bed. It's so silly but I just feel scared. The 'laying down horrible feeling' has noticeably increased over the last 2 nights especially tonight. My whole body actually flinched with the jolt in my chest. Heart is pounding.. feel like I've got vibrating bubbles doing through parts of my legs, it feels horrible. I wish I could just ignore it but its stopping me from sleeping. Hopefully soon I'll just be so tired that I'll doze off sitting up.

I spoke with LBH last week as they called up about an appointment. The only drawback is that the next available appointment is (privately) in August. Apparently he's the best person to see so it will be worth the wait. The lady on the phone said that usually the case would be delegated to other members of his team but because my case is as it is, he wants to see me himself. I just wish I knew what to do in the mean time because I'm beginning to worry that it's building again. What do I do about work? I have no idea what's going on and there is no one at the moment that is going to make any difference as it all hinges on the August appointment. I think its clear to me that I can't smoke because it seems I go a bit strange close'ish to when I've had one. It's all so frustrating and I wish this bloody tinitus would shut up!

27th:
Loss of voice (24hs ish).
Pains in knees, legs, feet, hands, back.
Consistent pain on inhale/exhale ribcage and in upper back after laying.
Cold!
Strange circulation.
Problems laying down - horrible feeling.
Feeling of tongue swelling.
Patches of forgetfulness.

28th - 29th:
Worse problems on laying down - cannot sleep laying.
Pain in feet, back, ribs, legs and hands/fingers - seems to be getting worse.
Tired and cold.
Intermittent voice throughout day (voice seems to go when cold?).
Ache and sore.
Pins and needles in left toe (morning).
Dizzy.. headache.

I'm getting to tired to even think more at the moment..

April Update

It's been ages since I wrote. I guess I've been putting it off as so many things happen that at the end of it, I don't really feel like sitting here going over it all again.

In the end I didn't send the letters... yet. It's probably for the best while we're still trying to get to the source of the problems as it has the potential to cause a lot more stress.

Since my last update I've been back to Dr C (neuro) and Dr B. Dr C listened as usual but was unable to pin point anything specific based on the scans of the head. Even though on the previous visit he talked of testing the nerves (for numb patches and loss of mobility in foot/toe), testing the blood pressure and getting a recent MRI of the neck. None of that happened, so instead I had an angiogram done of the head. I know the head ones are fine! It's the neck I have the issue with, it's the neck that was the problem in the first place and only sorted itself out when the thrombolisis happened. Doctors don't seem to want to investigate it though. All I am thinking is that -if- something got clogged up in the neck, could it then lead to blocking off or limiting blood flow to the head and would therefore not show on scans of just the head? His suggesting was to go to the 'activation' clinic at KCL and see if one of the episodes can be triggered.. I'm not keen on this at all :(

Dr B (neuropsych) seemed more intersted in finding out what was going on and was trying to look at the bigger picture. He explained some things about my scans and letters which was really helpful. We talked over everything that's been going on and he began looking things up and asking me more questions. He believes that the cause is not pyschological and in light of that is referring me on to the Lupus and Rheumatism clinic in London to have that checked. It makes me feel so much better just to have something official that says 'no its not anxiety, you're not mad or making it happen in your brain'. So I guess, in a way I was lucky to see him but on the other hand, surely these checks should have been done at the hospital in the first place? Something like 15-17 attacks and 4 collapses in the space of 2 months and I have to wait this long just to be told that I'm not making it up in my head..

I'm glad to say that I haven't had any 'episodes' since that last collapse. The day to day symptoms are still there but I can put up with those now. My legs hurt.. I don't know why though, maybe from under use? Strangely enough, the voice problem is back again. I feel like a ballooning pressure in my neck and then try to speak and ..nothing comes out but a strained squeek. Lost the voice again for about two days straight and since then its been randomly coming and going.The circulation to my hands and legs is still wonkey and my heart rate still seems to be going nuts. It's worst really early in the morning or when I try to lay down. My ribcage hurts like it did when I had pleurisy years ago, but only on the left side. I know I shouldn't worry but when my heart is banging so hard and hurts, and the ribcage is hurting too, I get scared that it's just going to go 'pop' and there's nothing I can do about it. In my sensible non-paniced head I know it won't. So so so cold too. Last night was the worst night I've had in a while. Heart going so fast I didn't know what to do with myself, freezing cold no matter how many things I piled over myself and everytime I started to fall to sleep I'd be woken pretty much instantly with voilent muscle spasms - even whacked myself in the head haha. I think I've had about two hours sleep maybe but luckily I have audiobooks :D.

Going to try and go out for a walk later on. Might even be brave and go walk down to the garage to get the car back. I'll be so sad to see it go.. but with things the way they are at the moment I think it's safer that I go with an automatic.

Letter writing..

Wrote the ESA and DLA letters today to make sure they are up to date with what is going on. It makes me more sad and frustrated going over everything again. So much has happened, it's so hard to put it down accurately into writing and try and make another person understand without thinking you're an absolute looney!

Lost count..

I've not been updating this as much as I should have. I guess it's because recently the episodes have been more mild.

Up until now the constant elements have been:
>Goose pimples/pins and needles down left side of body and legs.
>Very fast heart beat, yesterday and today it's been up at 130bpm.
>Discolouration in hands and feet; red/white.
>Feeling of lump in throat/loss of voice.
>Very very cold.
>Sudden weight gain.
>Frequent loss of coordination when typing and slow thinking/speaking.
>Loss of mobility in left foot
>Pain in left toe every day, Intermittent pain in specific parts of the leg.
>Nerve feeling/tightness in face/head.
>Face spasm left side, mostly after physical activity.
>Bubbling/burp or tickling in left side chest. 
>When laying to sleep get a jolt in chest, pain in left side chest and a horrible cold feeling spreads all over body.
>Constant pulsing in stomach.
>Erratic circulation to feet and hands; red sploges, swelling.

Today (I think 15th attack)


Tonight I had a collapsing episode again at 6:30pm. I think I knew it was coming. I've been up since 8:00am and been feeling strange all day. We took the car for its MOT and driving it was not pleasant. I still cannot feel or move my left foot properly, which makes clutch control difficult, but it's over with now. Trying to bend the toes makes them flinch or shake. Throughout the day I've noticed that I've had trouble thinking and my coordination when typing has been poor since last night. When I typed I thought I was using the correct letters but only a jumble was coming out. It's so frustrating! All through the day I've had pins and needles down the left side and

At about 5:30pm I felt a little giddy and knew something wasn't quite right. Went inside, we ate dinner and I stood up to talk to my dad about something on his phone. As I was standing there I began finding it harder to listen and felt myself zoning out. Then swayed and felt myself go. Grabbed onto my dad this time to prevent falling and stayed there. My legs started to shake violently and they felt so so heavy, like they weren't my own. My parents then helped my into the living room. Trying to move my legs was like trying to walk with led boots on. It's now 5 hours later and its a little better. I've shot a video of me trying to walk at the moment, maybe it won't show very well but we'll see. I just can't... feel them properly. It seems to be the case that if I try to do any 'normal' physical activity (I washed the car yesterday) the attacks come soon after.

Over the last few hours I've been sitting quietly and was watching a movie. As soon as my parents got me into the living room my face started the pull to the side and composing a sentence in my head and speaking it  was very very difficult. When I try to speak I sound like someone with special needs. I don't really understand how I'm meant to deal with this. If my dad hadn't have been there I'd have been on the floor again, unable to move myself for some time. It's scary. Is it normal for a 26 year old to collapse three or four times at home in one the space of 2 months and have no treatment? I feel like 'because I am young' it's not of much concern. I don't know what I'm meant to do and it's scary.

A friend called me near the end of the film I was watching. At first it was hard to speak with him as it was hard for me to think and construct sentences. For a short while it was then pretty normal and about 5 minutes later, my face and tongue had been pulled to the side and I could barely speak through the slurring so we had to hang up. The pins and needles keep washing down one side of my body every few minutes.. or are they goose pimples, I don't know. Finding words for everything is hard. My heart has been thumping and tonight it's been 'tickling' and gurgling in the left side of my chest.. I assume that means palpitations? My face was boiling hot, I feel so much pressure in my head and my tinnitus is going so so loud. The rest of my body is absolutely freezing. I've been wearing a winter coat all day.

Sleeping is very hard, most nights I have to sit up and just wait until I fall asleep. If I lay down I often get pain in my chest on the left side. As I drift off I get a jolt in my chest and a horrible feeling spreads right down my body. That happens 1-4 times a night. I wake up sometimes in the night and can't feel my limbs properly.

The 'lump in throat' feeling still comes up and down 3 to 4 times a day and when it's up I can't talk at all (unless I put my chin to my right shoulder) which makes things, difficult. It's like I have some sort of balloon in my neck.

Anyway I'm going to add some images in here before I forget.

5th Mar 2012: Right hand cold, left hand swollen and hot.

7th Mar 2012: Left hand feels swollen and warm, right hand cold.

Sharp pains in leg, slight swelling of kneecap area on standing - 24th Feb 2012

Colour comparison - 3rd Mar 2012.

Red and white patches - 10th Mar 2012.

Mysterious purple travelling patch. Foot, knee and hand - 11th Mar 2012.

Random head pressure/hot flushes in head - 8th Feb 2012.

One of the 'worse' attacks (home). Face spasm. Loss of mobility face/body - 11th Feb 2012.

Red patch in foot - 19th March 2012.

Colour of foot in the bath, comparison to 'warm' hand - 13th Feb 2012.

Hand discolouration (filtered) - 2nd Mar 2012.

That's all for now I think.. Far too tired!

*Edit*

Also found this, it's from 20th February but I dont think I posted it in here:

"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 thougts 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 sentances 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!"

Auto-immune..

I've literally just come across this: http://autoimmunelife.wordpress.com/

I need to do lots of reading tonight! Could there possibly be light at the end of the tunnel? I had no idea Endometriosis had anything to do with auto-immune!

Also, I should make note of this for later: http://www.endofound.org

Perhaps I'm clutching at straws but it's worth looking at..

Another long night..

Once again my chest has decided it's a bad idea for me to lay down. Everything seems to go all heavy, then there is a rush of a horrible feeling all over my body and pain  in the left side of my chest, just under the rib cage. At one point I was pretty sure my head was inflating as this pressure seemed to fill me. Seems like I'm just going to have to stay up until I can fall asleep sitting up.

I tried some really gentle yoga stretches today. Even though they were simple my body was shaking for a fair while afterwards. It was going okay until the left leg came into it. It seems to only be able to do minor things for a short while and then becomes a bit of a dead weight. Had it flop over to the opposite side (during a stretch lifting the leg with a dressing gown belt) and it just went down further and further and I couldn't pull it up. Felt the muscles protest and try to cramp but I got it back eventually. I'll attempt some more tomorrow and see if there is any improvement.

Zzzz so tired..

Saw Mr D (ENT) yesterday evening at the hospital. He said that had it only voice that was the issue then he would have tried harder but as it could be something overall that was causing a knock on effect to the neck then he trusts in the current neurologist to find out what is causing this. I understand his position so there really isn't much I can do about it. I'm still not really sure how something can show up on one scan and then not on the next. I guess I just have to hope and wait. He did try to explain about the measurments being made in a different way and emphasised that the MWH doctor was a specialist in carotid scanning and not for lumps in the throat. These doctors are so strange, depending on thier mood they seem to discount one medical opinion if it doesn't suit what they assume and blindly follow the advice of another radiologist who happens to be their favourite. Part of me wonders if there is a bit of a 'silly boys club' going on where they don't know what it is so they reccommend their mates so they can get a share in the 'we don't know' medical insurance consultation payments.

I am shocked that last night the doctor would have been paid a substantial amount of money to sit there for 5 minutes and tell me that "I have no answers for you". This isn't to say that the man was mean or a horrible doctor, he wasn't. I understand that this is not straight forward. Still, no wonder they drive such posh cars when they get paid for solving.... nothing.

Sad

Probably stupid of me but earlier I wrote a teenie post on FB about being tired of being broken all the time. Although the virtual hug comments were all very lovely and much appreciated, it doesn't really make them a real hug. Wish I could have a really big hug.. one where I could hide and all the bad things would go away. Anyway, I wrote a message back to an e-friend and I guess it covers what I'm feeling right now.

Thanks for the mail. Yeah you're right but it's not that I'm pissed off, it's that I'm sad. I hate my life right now, I'm tired of being in pain or ill all the time. I'm tired of being a horrible burden on the people I love, having no independence and everything is a struggle. I'm totally disconnected from my friends and sisters. The whole world keeps turning and I'm stuck still wallowing in self pity even though it's more like sadness and frustration. I'm tired. I feel guilty for moaning about it as there's nothing I can do and.. Oh I don't know. I just want some of my life back. The last few days I've had the other condition i suffer with (for years) come back quite badly. If something was fixable then maybe I would feel happier.. but nothing I have is. I'm just a defect wrapped in a normal looking person. Mostly I can put up with that but the last few days have been harder. I appreciate the hug.. thank you.

It's been a rough few days. Seems like any times I get the funny feelings in my chest my insides turn to water and the cramps come. Tonight wasn't so painful but it was very unpleasant. My heart seemed to.. tickle.. and then I felt quite sick and the cramps started.. then a rush to the loo. How pleasant.

Update

It feels like I've not writtten in ages. It's not exactly the hardest thing in the world to do but I'm finding that because all this stuff happens, writing about it makes me go through it all again in my head and I get more frustrated about the situation. As I look back at the letters and all the things that have happened including all of the endometreosis stuff and PCOS before that.. I think to myself, am I cursed? Am I just really unlucky or is there something underlying that isn't quite right. I suppose you get to a point of having most of your independance taken from you where you start to question everything. I saw a 19 year old girl post on the FB endo page the other day about how unhappy she was, how her social life was impossible and how much pain she was in. I felt so sad for her and a part of me thought thank god I'm not at that stage of my life again. I loved being in Australia.. so so much, but to go through the last few years again.. I couldn't do it. I guess it's good that she's found out at that age as maybe they can help more. There wasn't much I could say to console her though as really there is only pain control and sometimes even that doesn't make a blind bit of difference.

Anyway, so I can say with slightly more happiness I've not had a 'scary' attack for the last few days. Things are seemingly a bit calmer which gives me hope that whatever caused it in the first place is under control. I had a cardiac at RBH on Thursday. I thought it would be fine but during the scan my chest was hurting a lot and after what felt like a long time I got one of the jolts and breathing felt funny. My pulse felt so fast and strong that I could feel it in my teeth and my whole head felt like it was pulsing. That tends to happen every night when I lay down to go to sleep. I try to pad the pillows up so I am almost sitting and eventually I drift off. The jolts aren't pleasant though and the feeling down half the body afterwards is.. nasty! It's almost as if someone else is controlling my breathing. Circulation is so very strange at the moment too. It's like I don't have enough blood in my body. Had a few cases in the evening that one hand was white and freezing cold and the other was swollen and red. Then random fingers will go red or white and the same with my feet. Random patches of cold.. I've taken photographs but,, well I don't know if they are strange or not but I know it doesn't feel right. The left foot still isn't working but I think it's slightly improved from what it was. I can sort of.. twitch it.. if that makes sense? The lump in the throat keeps coming back in the evenings and my voice randomly dies entirely when it's at its most annoying stage. It's like havina a bubble somewhere in there that pumps up at different stages of the day. One minute I can talk, the next I can't. One ultrasound showed one thing, another showed nothing. This is what's confusing me. If they have done a CT of throat, chest and abdomen, why did they not pick up on this in the first place? Why did the heart ultrasound pick something up when the people say the CT is fine. Now DrC is asking for an MRI of the neck.. All these different scans and some pick up things that others don't.. How am I meant to even begin to trust these scans? It all feels like it did during those horrific 4 years where I had scan after scan and they told me there is definately nothing physical wrong with me as the scans showed nothing. Yet the endometreosis didn't show on the scan and this did not mean it wasn't there. It most definately was. Sitting there gluing things together, screwing up my abdomen. I wish I could believe that what they say is how it is.. but when no one is really actively trying to find out what the hell is happening to me and why. it seems that if I look normal during a consultation, everything is fine.

What also confuses me is why do doctors ask for family history and just ignore it. No one yet has seemed to note that me and my father are having medical problems at the moment and both of our scans have showed nodules in the thyroid. Also, the blood test I tested positive for is a form of autoimmune disease, which my father has recently been diagnosed with (a different variant though).

I want to be better, I want my life back. I just need a bit of help :(

Monday.. I guess.

So...very..cold! Mostly in my arm.. no matter what I cover it with it doesn't seem to change. I even have Lamguino taped to it but all it feels like is cold sweat. Have had face pull/droop for about 12 hours now. My right hand swelled up earlier too, particularlly the first finger. I tried to take a photography but not really sure how that will come out! I've tried to go to sleep but a mixture of my chest feeling funny and the cold is keeping me up. Hopefully will just get too tired to stay up soon.

It's making me sad, just lost.. none of it makes sense.

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 :/