New to forum and waiting for diagnosis

Hello naxagoras
Have I understood that right the receptionist gave you a diagnosis, please tell me I’ve got that wrong.

Hello kira
Getting a diagnosis after all you’ve been through is a relief but also like starting over. You have no 'maybe it isn’t ’ hope any more and that is daunting. Give yourself time things do settle. For what it’s worth I look at the future only in terms of doing what needs to be done to make life as easy as I can for me and my family. Other than that I don’t give it a great deal of thought - why worry about a future that may or may not happen and miss today. I take each day as it comes and deal with each challenge as it crops up. That suits me kira. It may not be your way but with a bit of time you will find what suits you. It’s not the end but a new beginning. It wasn’t what you saw your life as being none of us did , but it is still your life so make it as brilliant as you can.


hi anaxagoras

That really sounds pretty awful. I would complain to the practice manager about this. You really need to see a GP and ask for a referral to a neurologist.

As tot says, a diagnosis from a receptionist is unacceptable. It could be PD or it could be something else, you really need a face to face assessment. I hope you can get seen soon.

I did pay to see a neurologist privately, and that cost me £200, He decided to transfer me to NHS care as he made the judgement that it would be a long term issue. I know not everyone can afford a private consultation, but for me it did cut that initial wait time.

thanks tot

I am trying to take that attitude too, and really hoping that getting my symptoms under control with medication means I can enjoy the physical activities I like for as long as I can. But also, enjoying the small things in life, like an occasional ice cream, that first coffee in the morning etc and taking the time to notice them

I’m not sure that I can refer myself to a neurologist. Do I not need a referral froma GP. I might investigate that tomorrow.

For a private consultation I could refer myself, although I did speak to my GP who did a referral letter. It is worth you looking at any local private hospitals near you to see if you need a GP referral or not. I live in Nottinghamshire and the closest to me is a BMI hospital which didn’t require the GP referral.
I have to say my GP surgery has been good and I can always get to speak to a GP even if only via the phone.

I suppose to be precise she told me she had spoken to the nurse and the nurse thought it probable that it was PD

That’s very reassuring. I will make some phone calls tomorrow to see if I can arrange an appointment.

Hello anaxagorus
In my opinion I think you should complain and loudly. It is not for a nurse to suggest Parkinson’s or anything else for that matter and it absolutely appalling that this be relayed to you by a receptionist. You have every right to make an appointment with your GP be it face to face, telephone or anything other method. I truly could not believe what I was reading and I think the way you have been treated is appalling in just about every way you can think of. I appreciate that the thought of complaining with everything else that is going on probably feels like too much, but what you describe is just wrong and your surgery need to be made aware of that.


Hello again kira
With an attitude like that I reckon you’ll do OK.
Onwards and upwards as they say

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At the moment I don’t think I have the will too complain. I also understand the position of the practice that they were(are) dealing with the pandemic and perhaps if they reflected I suspect that a great many people didn’t get the care they deserved or in different circumstances the practice would have offered.
I have this morning spoken to the secretary of a consultant in Oxford who will take patient self-referrals. I am hoping to get an appointment very soon.
Unsurprisingly this has lifted my mood a great deal and I would like to thank the members of this forum for the kind words and helpful suggestions.

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hope you get an appointment soon. I really found the waiting and not knowing to be awful. Please keep in touch and let us know how you get on.

I am glad things are moving and that you are feeling better. I completely understand that to complain is too much for you right now and respect your decision. However I do have to say that whatever the cause of someone’s symptoms, even where it turns out to be something straightforward, you should not get told that by a receptionist even if a nurse had been consulted nor should a nurse be deciding what’s wrong and to do so with something like Parkinson’s is beyond belief. So unless I totally misunderstood your post, it has nothing to do with the pandemic it is simply bad practice and simply should not happen. That apart I do hope an appointment comes through for you quickly and that you have a much more positive experience than has been the case up until now. Good luck

Hi @anaxagoras ,
Sorry to hear your awful experience with your surgery. Being a nurse I wouldn’t accept the behaviour of nurse and the receptionist. I would make complaint against Gp and the nurse. They both knows the importance of early diagnosis and treatment and the outcome commencement of treatment . It’s their duty of care and professional responsibility. Now I am thinking how lucky I am. When I went to Gp with my symptoms I have been seen by a junior doctor along with senior GP. Junior doctor was happy as I don’t have any weakness and no loss of power or sensation on my limbs. But the senior gp said this need further investigation, if I refer you to the neurologist it will take minimum of 3 months. So she referred me to AEC ( ambulatory emergency care ) clinic in the hospital immediately. I am giving a big salute to her.
I hope you will get an appointment soon and things get sorted soon. I would suggest you to raise complaint as no one else should suffer like you … blaming everything for pandemic is not the hymn. Be positive and move forward. You are not alone. Wishing you all the very best.

Hi Kira,
I am in a similar position (when I work out how to write a post I will share my long and boring story!). I hope you get some answers soon, I find it is frustrating (and upsetting when it’s getting me down) to have something so obviously wrong but to not have a clear answer yet.

Hi Constance - I did get a diagnosis of parkinson’s (it is probably lost in this thread somewhere) a month ago and with the meds am now feeling much better. Taking one day at a time.

Please share your story, it really helps to be able to share it with others that understand what you are going through.