So today I rang the neurologist to see if they had received my referral,my referral was sent by my doctor in January and I hadn’t heard anything. Today the neurologist had said that they received the referral and it will take a further 18 weeks before I get my appointment.
My anxiety is all over the place, my emotions are up and down because I’ve been waiting so long and I feel like my symptoms progressing I’m suffering really bad with fatigue at the moment as well which making my days at work harder for me.
@Mimmi For me it took 40 weeks between GP referral and 1st appointment and another 44 weeks until 2nd appointment where DatScan was ordered, it was only this year and calls and emails to PALS at the hospital did I get the answer. The way I dealt with the wait was reading posts on here and talking to the the advisors on the helpline. I also avoided doing google searches (most of the time)
Hi @Mimmi, thank you for your post. It is completely normal to feel anxious when you’re waiting for your appointment. Please know you are not alone and we are here to help.
We have information and support with getting a diagnosis on our website. It details how to prepare for an appointment and how to manage your symptoms. You can find it here: Getting a diagnosis | Parkinson's UK
We also have a free, confidential helpline on 0808 800 0303. Our specialists can offer you the advice and guidance you need as you navigate this process, and signpost you to other support available to you.
We hope this helps. Please reach out if we can do anything.
Your anxiety and stress at the time your referral is taking is very clear in your post, as is the impact that it is having on your life and health. There is not a lot I can say which will help very much, there are no tips for example that will speed the process up and you will probably just have to wait I do think you should bear in mind however that giving you a wait time of 18 weeks could be something of a double edged sword. Maybe it is acurate and in 18 weeks you will have an appointment. However I can’t help but think it is not that straightforward. Presumably referrals are processed in date order (which seems to me to be the fairest way) but the time it takes is likely to vary depending on the complexity of the referral. So I would encourage you not to get too set on counting the weeks - you might get an appointment in less than 18 weeks which would be great but equally it could be 21 or 22 weeks and if you are fixed on an 18 week wait the extra week or two would be extrenely hard. I don’t say this to make things harder for you, but when worried as you are it is easy to take things literally and that worry can increase if the expected thing doesn’t happen right on time.
You didn’t say but I assume you are worried that you may have Parkinson’s so I thought I would just throw in a couple of points that may take some believing but which I hope will help,
First it is perfectly normal for your emotions to be all over the place, it’s a worrying time and it makes life hard because you still have to get on with your ‘normal’ life - work, shopping, paying the bills etc, when life feels anything but normal. If you can try to remember this it may give you some perspective, allow you to see it as a ‘temporary state’ which will pass and in the meantime just go with it as best you can and don’t beat yourself up
The next big thing you face will be your appointment and your roller coaster of emotions will probably continue although the focus will change. It is likely you won’t have much idea of what will happen and writing down any questions, or fears, concerns or whatever may help clarify your thinking. You don’t necessarily have to do anything with it just the act of writing it down can help stop it all just going round and round in your head just getting to be a bigger and bigger issue all the time. It may also show you more clearly what the main issues are for you and not see everything as one big mess.
If at the end of the day you do get a diagnosis of Parkinson’s the emotional roller coaster will probably continue and it can take some getting used to. However I am here to tell you that such a diagnosis is not the end of the world unless you choose to see it that way. It takes time, some longer than others, but you can still have a good quality of life and don’t have to give up all your plans and dreams. I am now in my 17th year post diagnosis, still standing, just getting on wth my life on my terms which includes living happily on my own.
I don’t know if what I’ve written will help you at all, you may not agree with it or believe it and that’s ok but maybe you will look at your situation a little differently and come up with your own strategies to help manage this dificu;t period.
Hello Mimmi .. Of course you are anxious, that is quite normal. If you do get a Parkinsons diagnosis it is not the end of the World. A big shock initially but you get used to it and will find that you can cope.
Your fatigue may be down to worry & lack of sleep. It could also be any condition or other medication you take. Do not assume it will be Parkinsons.
Of course you can go private, cost about £250 & get seen in about 2 weeks or take out health Insurance. Benenden Health Insurance costs £15.85 a month. Access to consultants & scan after 6 months membership. Even for existing conditions. This assumes you cannot see an NHS consultant in reasonable time.
