The Road To Diagnosis

Please note: I live in England, this is from my personal experience. Others may find the process is done differently, and times and amounts of appointments may vary. As this is a very individual disorder, for each person that has it. I hope that this at least gives an idea, of the process and some hints to help you in your journey.

The diagnosis of Functional Movement Disorder, can take many years to get to. This is due to the overlapping symptoms, of many other Movement Disorders. It is a time of constant questioning, and looking for answers.

I personally, have had some spasms and things happening to my body going on for years. All named different things, and never looked at as a whole. It took me many illnesses, many visits to my GP Doctors, and a few visits to the A&E and Acute Assessment Unit Ward at the hospital.
In the end, having broken down from pain and confusion in front of my GP Doctor. We eventually talked through all my ongoing problems, and the things that had gone on in the past. This in turn, eventually persuaded my GP Doctor to refer me to see a Neurology Consultant.

You see sometimes you have to push it yourself, there is not always someone else to do it for you.

The person that knows your body the most, is YOURSELF.
– You know when it seems to be going wrong.
– You notice the changes.

The Doctor only knows if you make an appointment, you have to make yourself seen and heard. If you are seen in a surgery that has more than one Doctor, you may also have the problems I had where I saw 7 different Doctors in the year. This of course means you have to re-tell your medical history over and over again, and there is no one Doctor to keep up to date with you on a personal level.

There will come a point where your notes will begin to show a pattern, that you have been seen many times. Seen about unexplained symptoms, or the same symptoms several times but never resolved. Or about points in your medical history notes, that becomes noticeable they can start to link together over time.

Once you have reached this point, and are now referred to be seen by a Neurology Consultant there will be a wait for your appointment to come through.

My advice would be to start taking notes of what your body is doing, there are many different ways you can do this. Here are a few ideas:
* Write it as bullet points
* Write it as a journal
* Start up a blog as I did
* Note main days or times, anything out of the ordinary that makes your movements happen and become unusual
* Get your partner or a friend to take videos of some of your movements, try to capture the different movements that happen to you

Anything that you can note down, or videos burned to a disc that you can take to show your Neurology Consultant is useful.
It will help your Consultant to see your different movements, and how you react. If you take in notes, or a journal. It will not only help the Consultant as you will be able to leave them for your Consultant to look over after you have gone, but will help you during your appointment to use as your reference when explaining what happens to you.

Having a piece of paper, a note book, printed out blog notes, these give you something to physically look at as the first appointment is nerve racking.
Your not sure what is happening to your body or why, and you are meeting a Neurology Consultant for the first time that is going to make a big impact on your future life if they are able to diagnose you.

The Consultant will ask you to walk across the room, they will get you to sit and do tests for you to touch your nose, check your reflex responses etc.

Note: DO NOT EXPECT A DIAGNOSIS ON YOUR FIRST APPOINTMENT, YOU MAY HAVE A FEW APPOINTMENTS BEFORE A DIAGNOSIS

The Neurologist will probably not speak too much, they will let you do the talking. They need you to explain everything you can about how you feel your body has changed, and what movements you are now displaying.

All through this first appointment, the Consultant will actually be assessing you. They will be listening to you, watching you and taking everything in.

You may be referred by your Consultant for tests, blood tests, and scans. There are many different scans that can look for different things, so you may be sent for more than one type of scan. You may not be sent for any.
If you have had a recent scan, they will most likely be able to use that one either.

You may have many tests and scans, and you will find that they all come up empty. They show nothing, no results. This is one of the indications that there is no “Organic Brain Disease”, and that it is therefore a “Psychological Disorder”.

This can leave a patient feeling very distressed at the lack of test results, that there is nothing to show for all the pain and movement spasms and upset. Unfortunately it comes with the disorder, and we are told that the disorder can come from past stress and upset at some point that we could not deal with at the time it was happening.

My Neurology Consultant (a Movement Specialist) explained, try to think of your brain as a computer. That your brain (computer) still has all the hardware, but the software is out of date and has begun to slow down. That with a computer you can defrag it, all the files that you delete over time leaves spaces. When you defrag your computer, those spaces all get pushed back together and so frees up more space on the system to continue working at a better rate or speed.

This is where the Neurology Psychologist comes in, a Psychologist looks at how the brain works and why it does what it does.
You will probably be referred to be seen by a Neurology Psychologist, and they will firstly assess you and ask if you wish them to help you. There is no pressure, it is a patients choice.

As I am already going through the process of Psychology Treatment, in my blog I have put up pages to explain what happens. I will copy them to this site and add the links when I have them ready.

PLEASE NOTE: I AM NOT A MEDICAL PERSON, I AM JUST A PATIENT SHARING INFORMATION.


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