I know this is last minute but I would like to ask you advice re neuro appointment tomorrow.
I have not been seen by any neuro for 4 years as tests were mostly normal. I refused lumbar puncture and I took the wait and see approach. I have been given a dx of fibromyalgia or possibe chronic fatigue however different specialists do not agree on this.
I now have new symptoms and feel I should have another go at getting a definite dx.
My question is, considering I have been given several different possible causes for my problems, should I start from scratch with this new neuro and let him make up his own mind or tell him about the other specialists I have seen ? Do I take copies of scans with me tomorrow ? I tend to think I would like a complete new start, what do you all think?
Hi, well I thought I was getting that last year, when another different neuro said if he was me, he`d be very annoyed at not having had a dx after 14 yrs.
he said he would get to the bottom of all my problems.
Then i didn`t see him until my LP last month!
I get where you`re coming from, but I think the new neuro will tell you what he plans to do.
Good luck with the appointment.
Write your list of symptoms/questions. Is someone going with you?
i`ll be waiting to see the next instalment hun.
Just to say good luck for your appointment tomorrow X
Hi, Good luck with your appt’ tomorrow, I’d be inclined to let him make his own mind up, but having said that are you going to the same hospital as if you are he will have your notes already. Just a thought. But as Poll has said make a list of all your problems starting with the worst.
All the best
I’m guessing I might be too late, but I agree that a fresh start is a good idea. However, as Janet says, everything will be on your file if you are seeing someone in the same hospital as before, but if you aren’t, I would take everything relevant with me if I were you. For example, you say your tests were “mostly normal” - that means that there was something not normal about them and that information may be useful for this new neuro.
I think, if I were you, I would be upfront about the past with this neuro, but just tell him/her that you’d really like to start from scratch.
I hope it goes really well.
Hi All I greatly appreciate all your kind replies to my email and was pleased to see you all thought a fresh start would be the way to go.
Unfortunately didn’t quite go to plan. Neuro’s opening words to me were “I see you have seen several neuros in the past” (unsure really how he knew this as previous appointments had been at another hospital, I can only assume kindly GP had filled him in).
Anyway, I explained I had been getting some new symptoms and showed him letters from optician regarding double vision and from physio about her concerns re back and chest spasms I am experiencing.
We quickly spoke about long term problems with my mobility, balance and weakness and he examined me in the usual way.
He then said he was sure my problems were ‘functional’. Saying it was obvious I had real problems but he felt they were not because of anything physical… I asked him if my eyes and back spasms were also functional and how he could tell this. He was unsure and said if I was really concerned he would order a spinal scan, which of course I agreed to. He also suggested I see a neurophysio. I came away with very mixed feelings. Pleased he had ordered another MRI but unhappy that he jumped on the same bandwagen saying my symptoms are functional. What do you all think about this ‘functional’ term?
I’m glad you managed at least to get a spine MRI sorted.
Regarding the ‘functional’ label, somebody posted this link a while ago, and its worth a read.
Neuros can be very reluctant to contradict their colleagues to the extent that people get stuck with a functional label who shouldn’t. Functional disorders do exist though. There’s a great website that you should have a look at - see if any of it rings a bell for you. Hopefully the spinal MRI will get you closer to an answer though. The website is www.neurosymptoms.org Karen x
Thanks again for your responses.
I have had a good read on your suggested sites about ‘functional’ problems but I am not ready to accept that label now if ever. It just seems like a cop out for people with negative results. One could say all neurological problems were once functional, MS included, but now they have found a way of proving its a real condition so its accepted by all medical people.
Nobody wants a label that implies, could be in your head, so I will carry on without that one.