How I go about getting ready to see a medical specialist

By now I have seen many specialists and am about to see yet another specialist. At the beginning it was
daunting but now it's my new normal and I feel like I am forever waiting to see a specialist or my doctor is looking into finding me one to see who might be able to help. 

The first specialist I saw was a specialist physio who deals with vestibular disorders, then I saw an ENT (ear, nose and throat), followed by a neurologist and I am hoping to see another neurologist (who is actually head of the neurology department at a hospital near me). Due to Covid a lot of specialists are triaging their referrals and taking them on a case by case basis so if they don't think they can help you they will turn you away. They are also triaging referrals so it depends on how severe your case is and/or who you have seen prior. I had to wait a few months to see the ENT but then as the ENT referred me to the neurologist I was prioritised and only waited a couple of weeks to see the neurologist. Then for this neurologist I am waiting to see the receptionist rang me up first and told that the neurologist would see me but she wanted me to do a combined appointment with the specialist physio I saw a year ago (they work in the same office). When I mentioned I had in fact seen that physio and the diagnosis wasn't correct the receptionist then said she would pull my files and let the neurologist know and I am currently waiting for an appointment. 

I have a document that has everything written on it from my current diagnoses and what medication I take, the day the dizziness started to what tests I have had (and the results), the specialists I have seen and when it has increased. It also includes some random dot points of things I have experienced that may or may not be related to the dizziness as I figure there's no harm in including them. I bring a copy of it to every specialist I have seen and update it as I go. This document is helpful as it means I won't forget anything important and the specialist can also use it as a reference if need be. After my last MRI I actually gave a copy of it to my doctor which he found great as it covered everything and meant it gave him a clearer picture of how to move forward.

I personally find it helpful to google the specialists I am seeing as it puts my mind at ease (I do the same for medical tests as well). I want to know the reviews and what areas of interest they have, you can also see what medical journal articles they have published and read them if they are of interest to you. 

During the appointment I make sure to ask questions and self advocate. If I feel like I am not being listened to I will speak up and refer them to the documents I have brought. It's almost certain that at some point during the appointment they will mention my anxiety and it contributing to the dizziness. Early on in the appointment I try to explain why its not my anxiety and also mention that my psychologist has actually done her own research into it and has determined that there is no link. 

While I know that any specialist I will see will send a report back to my doctor, I always like to debrief about it with my doctor afterwards if possible (which is easy as I see him every 2 weeks). It means that if I felt that the specialist wasn't right or said something that made me annoyed I will tell my doctor. This was helpful in the case of the neurologist (which my doctor didn't actually refer me to but the ENT did) as it worked out that I saw the neurologist in the morning and then my doctor in the afternoon. That appointment was one that left me in tears and it meant that my doctor then realised that any other specialist I see needs to really listen and not just assume things. 

In a strange sense I almost treat seeing a specialist like a job interview, I put time and effort into how I look because I want to be taken seriously and I make sure to arrive there early (because no matter how much paperwork you had to fill out beforehand there will always be more!). I fill out any paperwork beforehand and make sure it covers everything. I also have a folder with the following in:

• The above document with my history and timeline on it.
• Business cards of who I have seen/contact information for the specialists.
• A copy of my year of dizziness journal (this is mainly just so I have a physical copy of it and I don't present it to the specialists)
• Contact details of my doctor and psychologist. 

With every specialist I see I find myself hopeful that a diagnosis of the dizziness will be found and a treatment will work that will either reduce the dizziness or completely rid myself of it. But at this point in my time I am trying to accept that it will be permanent and like my anxiety it will be about managing it and not finding a diagnosis or cause.