By some weird quirk of fate, I am now going to see a neurologist for my first appointment on Monday instead of having to wait until September.
My dad is coming up to go with new to the appointment. I've made a list of the symptoms, my current meds, and a time line of events.
I've also tried to list some questions that I'd like to ask, but I can't think of many outside of "what is wrong with me, how are you going to find out, and, how are you going to treat me".
Any advice would be most welcome. Thank you.
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ClareO1986
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I must admit that I am quite nervous about it. I have no idea what to expect and I'm worried that I will forget something, even with the 8x A4 pages of scribble I've made.
I went through the mill a couple of years ago - i had neurologists assessing me for treatment and because i was in a legal battle, i had neurologists from the defense and neurologists from my sides legal team all assessing me around the same time. I got so confused as to who was really there to help me as a doctor. It did me a lot of harm because i couldnt and still cant yet talk or think fully about what happened.
I am pretty sure the NHS were a little dubious about me in the early days because i was in a legal battle about the crash, I thjink this is one reason why its taken so long to start proper treatment of both cognitive and emotional.
I did exactly what you are doing, the dozens of bits of paper of info you must remember and questions to ask. Wht i learnt in each meeting was, apart from bullet points of things that are paramount to get across, it doesnt make any difference. He/she tend to ask open ended questions and assess you from the moment you open your mouth. I know that they made a note i had done lots of 'work' on listing questions. That in itself meant something to them.
I think the hardest question they ask, and they all do as you sit down, and that is 'how are you?'. I have never been able to answer that truthfully, i always say i'm ok'. we do dont we.
I dont know, and please chat to people who do, but i feel looking back that its your frame of mind that is more important to get right on the day, rather than swotting up the night before. Getting to a frame of mind where you can be yourself, the you you are now, so he can assess that person for treatment. To get the best path from the meeting for treatment/recovery.
I decided when my first appointment was arranged that I would need to make notes to take with me. My memory was never brilliant even before I hit my head.
I already know how hard it can be to explain exactly how I feel. My default these days tends just to be "I'm fine". My close friends and family know that when I say that, I probably mean that I've got some sort of head or neck pain to some degree. Only my partner has truly seen me at my worse, and my parents to a degree via text messages! I'm glad my dad has said that he will go with me. He is good at helping me to process and explain my thoughts. There is also the added bonus of him being a retired critical care nurse.
I'm lucky in that seeing the neurologist is not related to any sort of legal work. The injury was totally self inflicted, as a result of me being a clumsy clart! I can't begin to imagine how difficult seeing 2 different neurologists would be.
It was a bad experience with the GP that has made me nervous. I think he was dubious because I could articulate my issues quite well. I put this down to background knowledge of having been a first aider myself and from coming from a "medical" family.
I suppose all I really hope is that the neurologist takes me seriously.
As for being myself, I don't know how to be anyone else. Even in excruciating pain in A&E last night, I was still laughing with the doctor who assessed me as I was explaining the stupidity that was involved when I hit my head.
Yes i had similar with my GP. But it really doesnt matter, what matters is you when you see your neuro. I suppose it costs the NHS a lot of money to treat a patient like us (especially if it involves scans/treatment) and they have to decide who to spend on - so its not wasted.
That seems to be a reoccurring theme - that people have had bad experiences with GPs. I guess they have to be "jack of all trades".
I must admit that, although I am nervous, I am looking forward to seeing the neurologist. I feel like I am finally getting somewhere, even if it have to wait for tests.
Quick reply to say maybe ask what other help might be available if you need it ? What setbacks might you find ? What side effects there might be to any treatment and alternatives or what to do if you have unwanted side effects. Might be helpful if your dad took notes too and he will help explain the symptoms.
Thank you for your suggestions. I will add them to the list.
I'm sure my dad probably will take notes, or at least act as a backup. Having been in the medical profession, he will probably understand what's been said much better than I can. I must admit that I was glad when he told me that he was driving up (from 2 hours away) on Sunday night so he could go with me.
I have been with my neurologist 18 months now and all my notes I took with me he has kept in my file.
At first I did a daily diary when I started my meds Levetiracetam /Keppra so all of this is in my notes on how I was feeling,symptoms,side effects etc etc.
I have been lucky in finding one who actually listens to you and doesn't feel like you are wasting their time.
You will be fine they are trained to deal with neurological problems more than your GP
Thank you for the reassurance, it really does help. I hope the one I am seeing will listen and take me seriously. I don't see how he could not but who knows?!
Of course I will keep everyone updated. I'm more than happy to share experiences as I'm a firm believer that we can all learn from each other.
A few things I have found really help with Neurologists / Neuro Psych/ Psychs and this comes in handy if you have to ever fill in benefit forms
It is ok to have a list of symptoms e.g. headache, memory, fatigue etc. but have a list of how it affects you or your family - my memory is poor sometimes I forget the names of things
Have a think of what a typical day looks like, that gives the specialists an idea what you can and can't do and follows on from above.
Another thing that shows where you are in terms of recovery / symptoms is progress or any improvements. It may sound a little silly but even little things like i still have headaches but they aren't as bad as they used to be, help them work out where you are in terms of recovery.
And don't be afraid to tell your dad to speak up on your behalf, quite often it is the family members that have a better idea of how you are and the medical professionals will quite often as him directly.
I think I've tried to put any improvements in the notes that I've made, as well as the definite set backs.
The problem I might have with my dad pitching in is that this will only be the second time he's actually seen me since bumping my head. They live a couple of hours away. That said, he's had endless texts about random things I've noticed so he can probably give a fair picture. He was the one who told me to ring the department to see if I could be seen sooner and offered to pay for it if necessary. He's normally laid back about things so he must think I need seeing. He also told me that he was coming without me asking.
I'd never thought of noting how things affect me and my family. My partner has got the wrong end of quite a few bad moods recently!
As a dad myself (with children in their 20's -I won't say grown up because in a dads eyes, you never do) I know instantly when mine are not right for whatever reason, especially if I haven't seen them for a while.
All the best for the consultation and they are on your side ...
Thats why they build dads the way they do for daughters to have a shoulder to cry on and I don't think you will be the first or last to get a little emotional in front of Neuro - even some of us gnarly old guys have had a little moist eye on times
Actually, I can totally believe that. I was never an emotional person until my bump, there have been times since when I have been a complete wreck! I think it's as much, if not more, down to the frustration as well as the constant low level pain.
That is very much how I feel too. I'm also about 4 months post concussion. Thankfully, not all of the symptoms come back at once but they are all very intermittent and somewhat frustrating.
Sadly my neurologist and I have agreed to part ways! The truth is that we still know very little about the brain (despite having expensive pictures) and trauma injuries are all unique and frankly impossible to treat. Initial care is very important but one's own body does the work and in the years that follow it is useful to have other services such as psychotherapy. They can try to alleviate particular symptoms too but it all tends to need ongoing monitoring and adjustment - there are no simple solutions and they cannot give a useful prognosis for trauma as it varies so much. Don't expect too much...
To be honest, I don't really know what to expect. I'm fully prepared for the fact that they could do various tests and find nothing obvious wrong, but in some ways that will be reassuring in itself.
As for initial care, there wasn't any really. I had a small cut glued on my head and was checked out for other potential problems but they weren't worried because, at the time, I reeled off my mobile number from memory. The more major problems started a few weeks later. The thing that really bothers me are the, at times, crushing headaches and the feeling of something moving in my neck. I'm sure I'll soon find out.
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Yaaaaay bcc arent a waste on resources (if you work for them)
Visual weirdness. A quest for knowledge.
Thanks for advice/info
A little advice please.
