If you’ve been a long time follower of mine and have read my post PKD & Me, you’ll know that I’ve been battling with my doctors to get an answer for something I’ve been coping with for years. I wanted to share with you all the importance of pushing for a diagnosis if you’re confident that there’s something more going on than what you’re being told – if I didn’t keep on pushing, especially in the last 18 months, then I would have continued to believe that my problem was purely a mental health issue when it really wasn’t. All it was doing was causing a mental health problem that’s going to take me a little while to get through.
I wrote a post quite a while back about how doctors can sometimes confuse mental and physical health issues, which I can understand is easy to do – they just go by what you’re telling them and don’t tend to delve deeper into your medical history.
I’ve put together a list of tips that I’ve learnt in my journey to getting my diagnosis for PKD (paroxsmal kinsigenic dyskinesia) and hope that this helps you in getting an answer to your health issues;
- Keep a diary of everything that is happening to you – this will help the doctor understand when your problem seems to occur, the frequency, intensity; basically whatever your problem is this will help them understand it a bit better
- Make notes during your appointments (this is something I wish I had done) of any key things you want to take away or do after the appointment
- Follow up on any appointment bookings if they haven’t been made or letters if you haven’t received a copy – I think my journey would have been a lot quicker if I had done this
- Ask for a second opinion if you’re not entirely happy with what you’ve been told, but if you’ve been given a diagnosis you don’t like and have been told the same thing by two different doctors, I think it’s time to accept your diagnosis UNLESS…
- You’ve tried out everything that the doctors have suggested (taken all of the different tablets, tried out the various therapies etc.) and you’re still having to deal with the problem, ask to be referred to a specialist in the field that you believe is causing your problem (for me it was a neurologist – brain) and if it’s the specialist you’ve been referred to…
- ASK WHAT YOUR OPTIONS ARE! When I was told that he wasn’t convinced I had a movement disorder, I was firm in my disagreement as I knew there was something more going on than a psychological issue. He then presented me with two options one of which eventually helped me get a diagnosis
- Do some of your own research, BUT DON’T GET LOST IN THE RABBIT HOLE OF GOOGLE! It’s easy to search for “Why have I got a headache” and come out believing you’ve got a brain tumour, so be careful, stay away from anything like Reddit – I try to keep to registered medical/charity websites for information like the NHS or in my case, the Epilepsy Society, Dystonia Foundation etc.
- Try to keep your mental health in check – I KNOW this is a hard thing to do (if anyone feels you right now, it’s me. I FEEL YA!), especially when you’re in limbo during the time you’re searching for answers, waiting for appointments, chasing up un-booked appointments or letters, but know that you WILL get an answer and this can’t go on forever
My PKD ended up deteriorating and with it, my mental health because I didn’t receive the right support from the healthcare system. I lost my independence, I became a recluse, when I went out I was a quivering mess that would have panic attacks, my PKD episodes were prolonged because I was constantly on edge and I was a shadow of the bright Gaby I knew was deep inside. I don’t want ANYONE to have to go through what I did to get answers to their health problems, it’s one of the reasons I’ve consented to being part of research into PKD as I don’t want this to continue happening to others going through the same thing.
Suffering in silence is not the answer, whether your health issues are external or internal, you need to push for a diagnosis and I hope that my post has helped to give you a push into getting the answers you need.