Neuro letter - frustratingly inaccurate!

New diagnosis and before diagnosis
1

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.

2

Hi Purpledot, This happens to me nearly every time. The last couple of times, I’ve thought the consultation went well, then ended up seething and coming here for a rant, when the write-up didn’t appear to reflect the consultation I remember having! The time before last, some things were factually wrong, such as I was incorrectly described as being unable to see certain colours, when the opposite is true - I’m seeing phantom colour in text that should be black and white! The reviews have universally ignored that I’ve ever mentioned fatigue as a problem, despite it being probably my single biggest issue. Last time, despite being a diagnosed person, I was said to have NO significant symptoms, other than painful feet, and slight urinary hesitancy. This in no way captures how I feel on a day-to-day basis. As if I had flu’, at least - not “no symptoms”. Having discussed it with others here, it could be due to the huge spectrum neuros see. I know that does not excuse writing the results of a test or examination you never had, but it could certainly explain why we get reports suggesting few problems, when we think we have quite a lot, and that we’d told them that! Obviously, if they are used to seeing much worse cases, it can have the effect they unintentionally seem a bit glib about things we think are serious. During the consultation itself, my neuro (who was a new one I hadn’t seen before) kept repeating how sorry he was I didn’t feel well, to the point I almost wanted to hug him, and tell him: “It’s NOT your fault, OK?” So I thought I was getting through alright. Then the report came back, suggesting I have few or only very minor problems. Compared to a patient seen before or afterwards, that may very well be true. Other things are simple mishearings or misunderstandings. Clearly, I wasn’t understood when I tried to explain the colour vision abnormality - which is not an easy one to describe. So it was recorded as I’m not seeing colours, rather than I AM seeing some I shouldn’t. And it sounds like simple mishearing or mistranscription, when you were described as needing support “around the house”, rather than only outdoors. At least that one was judged as more serious than it is! I’m not claiming benefits at the moment, but my worry is that with all my reports seeming to say I’m fine, I have absolutely no evidence if the time did come for a claim. It’s not mentioned that I suffer from fatigue. Pain, if mentioned at all, sounds rather trivial, and not something that’s a serious ongoing problem, and so on. Try not to be disheartened by the fact he’s willing to admit he’s not sure, and wants to refer to a colleague. This part is GOOD, not bad. It’s important he is keeping an open mind, and not jumping to conclusions. A correct diagnosis is more important than a quick one, so the last thing you want is someone whose first guess is wrong, but then doggedly sticks to it, no matter what! Tina x

3

Been there. Sometimes I think my neuro was getting me confused with another patient, the letters seemed to bare no relation to what he said/did. Its like they make it up as they go along xx