Hello I had return appointment with neurologist finally. I was hoping for his opinion on what’s going on. He babbled on without giving me any real answers. Im confused. What i do know is this - he didn’t agree with the first radiologists report regarding lesions because he asked for a second opinion (said something in appointment about people being misdiagnosed and given unnessecary treatmeant). Did not tell me what first radiologist said. Possible demeylination was mentioned in letters but not mentioned in appointment. Now seems unconcerned about the lesions (even though in letter they are unusual for age and possible demeylination was mentioned) and gave no explanation as to why I have them. I eventually asked him outright if i might have ms and he said no. He did however go on to say it would be reasonable to order another brain mri and also an appointment to have eeg done (?)- not had this before). Impression I got was that these would provide reassurance and nothing will have changed. This is not sitting well with me as if there is nothing going on then why not just send me on my way. I would rather he was honest and said he thinks everything fine but because my scan was iffy they will repeat the mri and do other tests. He just seemed unwilling to say there was iffyness. Is this normal neurologist appointment goings ons? I’d appreciate any thoughts and experiences. Jen x
Hi Jen, no it isn’t acceptable .
I too am in limbo and being fobbed off. Have this test, have this scan and no explanations. I was discharged and told to go back to my GP if my symptoms persisted. Well, they never went away so I emailed consultants secretary explaining I was dissatisfied and why and now have another consultation this week. It might be an idea to copy your post and email it to the Chief Executive of the hospital concerned. That should get you some results and answers.
Let’s us know how you get on
Some people are an open-and-shut case. You aren’t, by the sound of things, or at least you aren’t quite. It seems likely that the infuriating lack of clarity that you have detected is a pretty good summing up of the situation as it stands right now!
You’re quite right: if there were absolutely no queries and areas of uncertainty, you would likely have been sent on your way. But you haven’t been. The neurologist wants to have another look and see whether that tells him more. I know it doesn’t feel like it right now, but that sounds like a sensible, prudent approach from a careful neurologist who doesn’t want to jump to conclusions on a difficult case, and wants to reassure you while conceding that he does want another look.
So yes, I think that is pretty typical for neurological goings-on. It’s the nature of the beast, I’m afraid: neurological trouble is notoriously hard to get to the bottom of.
Thank you for your thoughts on this Grandma. I will let you know how things go. I really hope your consultation goes well and you get some answers too. Jen x
Jen, having had my neuro appointment yesterday it transpired that he had seen/read/noted the issues I raised in the email I sent to his secretary prior at my appointment. You might find this useful for you too. I took extra copies, one for him and one for me to refer to during the appointment. I also took a copy of my symptoms and told him I expect him to read it as he will be questioned on it at a later date. I always take my file with me. I prefer the no nonsense approach. This time dh came with me, which was a big help. Hope this helps.
Thanks Grandma. I am going to go for next scan and eeg and see where I end up after that. I hope my next appointment with the neurologist will bring a bit more clarity and reassurance on what is or isn’t going on. I will raise any concerns with him at my next appointment if I am still not sure of what he is trying to say. I’ll definately take your advice and take any further letters, questions I have and symptoms list so that I keep on track during appointment and leave with things clear in my own head. I don’t think I’d be comfortable giving him homework on my symptoms though. Thanks again Grandma Jen x
You’re most welcome Jen. I didn’t mean for you to do any homework - I just emailed his secretary asking her to forward to him the issues that I had and still have so that he was aware of them prior to my appointment. She did, he was but I still took copies for him to peruse. At least he and his secretary no better where we stand. If i’m not happy I will email her asking her to forward a copy to him. He is very nice for a boy Dr - needs a bit of tweaking to get him into shape but we will get there.