Hi Beck
Thank you for your reply. One thing you said in your post was said to me earlier by the pyschologist about the wine tasting, thats freaky, lol.
What I meant by nasty things was that I keep feeling like I'm falling backwards. Other people, Ambulance staff, other specialists and familyt hink I'm having some form of fits. It can be set off by bright light, funny patterns, TV's, PC screen, fences of allt hings, sunlight coming through trees when your going past them in a car etc.
I've had an EEG but it was clear, but like the ambulance staff who came out a few weeks ago said, the EEG would only pick up if I was having a fit there and then, it doesn't tell them if I had a fit the day before or whatever, it's the there and then. So I think the GP telling me it's not any form of fits is fobbing me off. He thinks because I'm on amytriptaline that it cant be fits because amytriptaline makes it worse. What he doesn't know is that I've cut that down to 25mg a night from 100mg and it's not happened as bad as it was.
He also forgets that I've been on another medication, a hormone replacement that is known to make any forms of fits or epilepsy more noticable. The specialist who sorts my hormones is in London which is over a hundred miles from me so they get my GP to do bloods etc and he has asked my GP to send me for another EEG and to see another Neurologist but my GP wont. The first Neurologist my GP sent me to wasn't very nice.
I can only gather that it's because my GP puts in letters that I have fibromyalgia and once local speciliasts see this, they dont want to know. I was in and out of this Neuros office within minutes. I informed him I had a bit of hypophosphatemia, I keep twitching and he said he didn't have my notes and the phosphate thing was 'interesting' and that he would get my notes and see me in another hospital even more local. The next thing he had written to my GP, told him he had seen my notes and that it was stress.
I'd really like to know where he got stress from because he didn't know me from Adam and he hadn't even asked me anything really, and stress wasn't even mentioned. I told my GP this and he doesn't care. I also saw a local Endo who was very nasty to me and lied to me and my GP. I was there in his room and everything started going funny again, and he even said I looked terrible. I told him that it was what kept happening to me every few days and that I would be sick soon. He offered me into hospital but said 'I will do no further testing for you at all' so basically saying that if I went in I would be wasting his time so I said there was no point. He also kept repeatedly saying it must be a virus you picked up yesterday?!!!!!
He was in a rush to get me out of his room, and I couldn't walk, my girlfriend had to help keep me upright and get me out of the place, he was right up behind us trying to push his way past us. When it opened up a bit more he was tutting n then went round us and walked off in a rush. I then see the letter on the pc screen at my GP's a week or so later and it says exactly 'I offered him in for further testing but he refused' which was an absolute lie. I've told my GP this is a lie and that I'm angry because they could have found out once and forall what was going on when I was there as it was all flaring up but they didn't want to do any tests and my GP just doesn't answer. Since that appointment where I was ill I went to see this local Endo again and recorded the appointment.
I said that 'when I was here last you said I looked very ill' he said clearly 'yes you did' and I said 'you also said that if you had me in the hospital that you wouldn't do any further tests at all' he also said 'yes, thats right I did' and I go on to ask him 'then why did you write to my GP telling him that you did offer me more tests but I refused'. He looked at me a bit odd and said 'I didn't mean it like that' at which point I started to get annoyed and said well thats not what my GP htinks.
In the letter to my GP I also put that I have the whole appointment recorded and I am going to see GP nex week to play it to him if he still doesn't believe me. No matter what anyone says my GP just doesn't want to listen or help me. I am scared of the dentist, but last year I was in alot of pain and had to go. Her name is Julie and she is ever so nice, anyway she calmed me down as she is good with patients who are very nervous, and she looked at my teeth and decided to do an x-ray. She asked me there and then what's happening health wise because my teeth are all funny and not normal.
I mentioned the low phosphate and she said it was probably that then. But still, if she can tell I've got something wrong just by my teeth then I'm pretty sure these doctors can do a bit more for me. I know that whatever is going on is getting slowly worse. I've had two short synacthen tests or whatever they are called to see if I have Addisons Disease too because I kept getting low blood sugars and low blood pressures,. all of which are now being ignored because these tests have been done and have come back ok. My GP said that they can still come back ok though...so I dont know why they are leaving me like this.
I've already told my family to make sure if something happens to me and I dont wake up one day/night, then I want them to make sure they have me opened up and looked at properly to see what it was that has gone wrong. At one point I was soo ill everday and with everything else going on, well I didn't think I was going to last much longer. Infact I know I'm not going to be here much longer because they wont help me, they just keep ignoring me. My Psychologist is trying to help me and is going to write to the GP but I dont think it will do much good. It's mainly about the sensory things so the GP will just blame it all on that. But a persons blood pressure doesn't be too low alot, blood sugars dont fall, and phosphate doesn't be low for nothing. They've tested my waters etc, but it's all been while I've been ok to get into the surgery or hospitals.
It's never when I am so ill and this is what I keep telling them, they had the perfect chance when I was ill at the local Edo appointment, and they cant see why I am so angry about them saying they wouldn't do anything if I did go in. I'm pretty much doomed, so whatever anyone says it could be, there's not really much point because my GPs wont listen. They had a meetinga bout me by all accounts, all the GP's in my surgery did, and well, I dont know what was said apart from I must stop looking for what is wrong with me. Funny because I thought it was thier job to do that, and until they do find out, then I've got to live like it, and I dont want to carry on living like this. Never knowing when I'm going to fall down etc.
That said, they know how hard it is for me, and they wont even fill in a form for me to get some disability benefits. I had to threaten the disability place with legal action if they continued to ignore the things I was writing down on the forms. They had gone by my GP's form he filled in for them, despite them calling me asking me for a name of a specialist who I see because my 'GP hasn't filled in the form hardly'...so I'm pretty much stuffed.
I did get the right benefit in the end, but I've only been getting it for four months and already I have to claim again because it's due to end soon! The only hope I have is the Endo in London who has asked my GP twice to re-refer me to a Neuro since the last one didn't even talk hardly and had me out his room in minutes and my GP still wont. Infact one of the GP's I saw about it said 'if them in London want you to have another EEG and see another Neurologist, then they can send you for one themselevs down there'. It's disgusting since they know some days I cannot get up to go to the loo without being sick everywhere from vertigo, but they still expect me to get to London in the same circumstances. No animal would be left to suffer like this, it's inhumane. I've visited the Dignitas web page a few times now but I'm too scared because I dont actually want to die.
