2nd post (Advice welcome 2 years no diagnosis..) Making the most of neurology appointment, what to tell the doctor?

After your help following my 1st post I wanted to ask for advice for my next appointment. If anyone can advise, it would be really appreciated.

I don’t know what is causing my ongoing symptoms as I have several medical problems. I experienced a trauma which interrupted oxygen to my brain several years ago. I didn’t seek medical help due to circumstances at the time. I don’t know if that has caused long term damage. And not aware if it is even possible to get delayed impact from that…any insight would be useful.

2 years ago (as in my previous post) symptoms started following a seizure. There was no trigger found for the ‘seizure’ (which affected my right side). It made me think about other symptoms which could have been affecting me before- especially nocturnal seizures. The GP referral followed, to neurology. I’ve not seen anyone more than once, possibly due to current restrictions.

I’ve mentioned about the trauma ages ago and every time Im seen, I feel they have no information.

Any advice for how to make the most of the phone appointment? I don’t want to be discharged as happened before, and I also don’t want to waste their time talking about things which aren’t relevant. I’m finding it stressful coping with the services at the moment but am grateful to finally be offered support.

[New_beginning]

Sorry got no answers, we're only just at beginning with investigating Epilepsy for my husband and got appointment but also don't know what to expect. I've just kept logging symptoms, times, daily tasks he does. Good luck hope you get some clarity soon x

[Leaf100]

Have you talked to Headway?

Interruption of oxygen to the brain is a type of brain injury, if it were me I would want to be referred to a neuropsychiatrist - they are good at suggesting relevant tests and will know what type of other doctors you need to see. For example the one I saw was rhe one who referred me for an MRI, an epilepsy test, some other sort of ear/nose/thraot test I do not remember the name of, etc.

They can also rx medications for trouble sleeping, trouble staying awake, etc and monitor those.

I live in Canada and neurologists here only look at certain types of damage that can be seen on certain tests - neuropsychiatirst can and does diagnose brain jury, even if an mri is normal.

I will say I have a bias, because I got zero help from the old school neurologist I saw, and lots of help from the neuropsychiatrist . I do understand not all nuerologists are the same. (I have not seen a neuropsychologist though I did see a psychologis that worked with brain injuries quite a bit. )

It is possible to have brain injury plus other conditions.

Yes, it is confusing. Yes, some docs want info so they feel they made the decision. I am very literal now, and probably was before, so if it were me I would just say my brain was oxygen deprived and so I would like to be refered to a neuropsychiatrist. Then, if they offer you other stuff you can say yes to that, too.

If they latch onto the oxygen deprived thing and trt to put you off, just keep repeating you would like a referal to a nueropsychiatrist. (You need help coping and may need medications to deal with symptoms..)

As I saw, I am in Canada. Here if you ask fir a referal technically they are not allowed to refuse, but will try to put you off... so you have to ask nicely and then just be peasantly insistent, and if that doesnt work say 'I am not leaving until I get the referal.' Not sure how that plays im the UK.

Maybe this will spark some ideas.

Good luck, cat896, it is not easy to advocate for yourself when you have a bi.

Leaf x

[Marnie22]

I would definitely advise giving the Headway helpline a call on 0808 800 2244. They can talk it through with you and offer advice. Best wishes.

[robertbob]

Im guessing they have done a brain MRI and EEG? If not then might be worth asking for these to be done and for blood tests (including for inflammatory markers).I recently had a phone consultation which finally provided a diagnosis but only because they had done MRI and blood tests before the appointment. The appointment would probably have been waste of time without these.

bw

[Mads1975]

Hello, I think that the most effective thing you can do is to write down in bullet points all of your history that you feel there’s a chance that it could be relevant. Depending how much information you have, you could call before your appointment and ask for an email address so that the person you have the appt with is fully conversant with your health both current and historical.

Ask for it to be added to your file so that it can be referred to for other appts

[Pairofboots]

Hi cat. I find I have to list what I have to talk about. At this stage it is everything and anything for you. We can't second guess what is or isn't not important. If it worries you, talk about it. Don't worry about time wasting, they are there to hopefully find answers.

Phone appointments are generally difficult, because neither of you have any visual feedback. I'm sorry, but this is down to how comfortable you are with phone conversations.

Headway can help you if you are worried about what to say, so have a chat with them. 🍀

[Julesstillhere]

Hi cat, its Jules here,I saw a neuropsychiatrist for multi trauma based therapy who diagnosed brain injury although my mri was clear. Saw them for maybe 2 years. I saw 'experts in between, but had to wait about a year to see this neuropsychiatrist. I couldnt get anywhere with the people before and became quite sad and stressed, but answers started flowing about my condition and actually making sense to me once I got to see the right expect. (dont give up, keep going) it seems at lot of people have been through the same problems with care.

I know now that I cant be fixed, but understanding who I am and what happened empowered me.

Much love and care (and luck) to you

Jules

x

[sashaming1]

Discuss medications and supplements.Review treatment options.

Ask about referrals to related specialists.

[Hidden]

Thanks for your replies,

So useful to have and I am less nervous of appointment. Glad to have headway and helpline, thanks. It’s really reassuring to hear how others have got on.. tests and specialists etc.

Just useful hearing others as I feel alone with my experience. I also made a GP appointment, as they have referred me for other tests including ENT, bloodtests as well as prescribed medication. I will mention neuropsychiatrist as that sounds very relevant.

Hopefully this will give me more confidence in appointment. Heard my MRI scan was normal today so was pleased. Having your information made me realise it’s a long process and not as simple as a couple of tests ruling things out. I will have to be patient!

Thanks so much 🙂👍❤️