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,
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