Hello friends, I have finally got my neurology consultation date through, it is on Wednesday. It is my first ever, and as fate would have it, I am going through a good patch! I understand that Drs can only make a diagnosis based on their examination and assessment. Does anyone have any advice on the best way to get across that I am not always, in fact not normally, this well? Really appreciate your thoughts and advice. AmieLouise
OK AmieLouise, standard advice:
Make a list.
Write down all the things that bother you on a bad day.
Now group all the similar things together.
Next put them into order with the worst first.
Now write the list out again, and try to get it down to 5-6 items.
And, write it out again. Now you can take it with you as a typed-out copy (two copies, really).
All the writing is to get it into your memory - so you don’t need to keep looking at the list.
Tell the Neuro what is on the list - do not hand it over in the beginning, you want their attention on you.
You can hand over a copy at the end if it looks like a good thing to do.
Geoff
Do not worry about feeling well! Neurologists are perfectly accustomed to things that come and go. I remember being very put out at my first neuro appointment, because the MS relapse (as it turned out to be in my case, but I hope it isn’t in yours!) was fast resolving. He just laughed at how cross I was about this. What he did want to hear was a summary of what had been wrong, how it had felt, when it had started, how long it had lasted etc. I suggest that you go armed with a brief summary of that sort of information.
You might have a neuro examination (testing your reflexes and so on). If there is central nervous system trouble, these tests can often reveal that there is something going on, even when a person isn’t actually aware of it.
I hope that it goes well.
Alison
Yeah that’s good advice from Geoff. If anything behaves that doesn’t normally during examination tell your neuro. I haven’t been able to hop since my first relapse I literally get 1 cm off the floor. At my neuro appointment I did a huge hop and couldn’t repeat it when I went home or since and I didn’t think to point it out. Fast forward 2 months saw her in hospital and couldn’t see again so didn’t think to tell her. Fast forward another 2 months I got an eRly appointment in and mentioned it to her this time demonstrated she’s now wants another MRI with a view to changing the type of dmd I’m on Good luck X
Have you had MRI scan if not then I would be asking for one as well as giving them your list
Good luck
Have you had MRI scan if not then I would be asking for one as well as giving them your list
Good luck
Thank you for your advice guys. I am armed and ready with lots of information. I just hope I don’t mess it up! I know it’s not an interview for a job or anything, I’m just worried I’m going to come across like a bumbling idiot! My short term memory is appalling, (which is why the list is such a great idea), I can be talking about something and stumble to find a word, and then completely forget what I was saying. Also, I suffer from depression, I have for 20 years and I’m worried (from past experience with different types of consultants) that he will see “depression” in my notes, and therefore not take me seriously. I’m trying not to think like that, as it helps no one. An hour and a half to go. Fingers crossed for a productive consultation.
I’m sure they won’t discriminate you for having had depression Good luck with your appointment x
Good luck amie. Is someone going with you? I took a friend to my first neuro appointment and was really glad I did as she was able to remember what was said during the appointment (I spaced out for a bit!) and also prompted me to remind me to tell him a couple of things that I’d forgotten. I’d also had depression and anxiety over the last 15 years, but this wasn’t used to explain/excuse or fob me off! Let us know how you get on x
Hi everyone, the neurologist took a lot of notes, I did feel like she really listened. She did an eye exam, tested my reflexes, and did a physical exam. The diagnosis is Functional Neurological Disorder. I am obviously very relieved that it’s not a diagnosis of MS, I am however disappointed by the attitude of, you’ve got FND, continue on the gabapentin and amitriptyline and you are discharged! Now what do I do? Does anyone else have this dx? I’d really appreciate some input on what I do now. Thank you for all your help and advice. AmieLouise
Hello AmieLouise Reikiblossom has FND diagnosis. I’m sure she won’t mind if you send her a private message. She has found a good support group on facebook. Good luck to You. Noreen 
Thank you