Has anyone else felt frustrated and annoyed on reading letters from Neuros to find things in there that are inaccurate and not what you said/they said/happened??
I have just managed to get hold of the letter my Neuro wrote to my GP following my first consultation with him, and there are a number of things that are not correct.
Firstly, I said I couldn’t go out of the house without holding on to hubby for support, and he has put in the letter that I have to hold on to him to walk round the house!
Secondly, he said a pinprick test was normal, but he never did one (I think I’d remember that!)
Thirdly, he said that, apart from my balance issues, I was otherwise well, despite him taking my list of other symptoms, showing cleary that I am not well! I think I even tried to mention a few to him whilst I was there, and he seemed to listen at the time. He even started reading the list as I was leaving, so I have no idea why he would then dismiss everything on it! To his credit, he does mention my vision problems in the letter, so this was obviously significant enough to warrant being included!!
He also says that the “multiple cortical areas” on my MRI scan are thought to be ischaemic areas, so, “in the first instance”, is treating them as if they are ischaemic, rather than demyelination. He then goes on to say he wants me to be seen by his colleague to ensure he is not missing other neurological conditions. This makes me think that he is not 100% convinced it is ischaemia but is ruling this out first. Hence the barrage of heart/blood/bloodflow tests I am in the middle of ploughing my way through at the moment!
I kind of wish I hadn’t seen this letter, as, not only have I now lost a little bit of faith in the Neuro, who, at the time, I thought was wonderful…but, I am now more concerned that it is not so cut and dried that the lesions are ischaemic, and that this is just being ruled out first before they look at other things. The word “multiple” worries me too!
Sorry about the ramble, but am allowing my long journey through Limboland to get to me over the last couple of days (resulting in a not-so-perfect-as-usual 24-hour BP monitor result this morning) and just need to get all that off my chest.