In limbo


#1

I was referred by my GP to a neurologist and saw him for the first time last August 2018.
He sent me for an MRI and said all was good from results.
We proceeded to DAT scan in February 2019 and I received the following letter " I now have the results of your DAT scan which did show low dopamine levels. I will arrange to see you again in clinic to discuss the results and also the treatment".
I was then given an appointment date of 15th March to see him. My partner was going to join me for this and we put together a list of questions to ask.
Unfortunately five days before this appointment I received a letter to say due to unforeseen circumstances they would have to cancel this and re-schedule. Fair enough.
I heard nothing and after two weeks decided to call and managed to arrange another date of 28th May. If I did not call i now wonder how long i would have waited to hear back.
It is the waiting and worrying that I am finding hardest to deal with.
I appreciate I am lucky that I am seeing someone and that I am “in the system”.
From the inference in the letter I am reading that it is a Parkisonian diagnosis, but have not heard it face to face yet.
Anyway, roll on 28th May with my fingers crossed that this is not again cancelled.


#2

Hello there, however good your medical team turns out to be and however valid their reasons for cancelling, I do think they sometimes underestimate the impact this has on the patient and their families especially when in your position of waiting for a diagnosis. I hope your May appointment goes ahead and think you did entirely the right thing in being proactive to securing it. I was lucky with my ‘diagnosis’ appointments, I did not wait long nor did I have cancellations but I know that is not everybody’s experience and some fight long and hard to get the information, referrals and appointments they need. I hope they come good at the May appointment so that you know where you stand without further delay. I can’t do much to help but I do wish you well at this difficult time.


#3

Thank you Tot for your kind and supportive message. From what I have been reading about PD it is a very cagey bugger to diagnose. And the drugs to treat seem myriad and certainly hit and miss on effective treatment. It appears every individuals experience seems different and unique, linked by hitting four or five scores on a checklist of around 15 symptoms. Maybe there should be something in place to help support patients in the testing/diagnosis phase. It appears to be left to charities like PDUK and this forum.

Regards

Scott


#4

You’ve got it, the problem is there is not a definitive test, the symptoms can point towards a number of conditions and indeed within PD there is an array of different types. Obviously they need to be careful as they don’t want to get the diagnosis wrong but it would help I think, if this was better explained and of course only cancel appts if absolutely necessary and giving a new date at the same time. It doesn’t help if you have to chase, as you found how long do you wait and I think it adds to the impression that you have been forgotten or worse they don’t care. Still it is what it is, in the meantime the forum can be a good sounding board if you need and try not to let your imagination run too wild while you wait.


#5

Is it possible for you to request being on the waiting list for a cancellation? Many people need to cancel neuro appointments for various reasons.


#6

Hi Vanessa,

That is a really good point and one that hadn’t even crossed my mind. Although they did mention when I re-booked that my neurologist was himself sick/ill.
I have always been very fit and healthy and even now am only showing loss of fine motor skills in my left hand/fingers.
I think I’m of the mindset of others more needy can come before me. But now you have put this in my head I will phone and ask. They can only say no.
Kind regards

Scott


#7

Good idea. Didn’t occur to me as my own journey to diagnosis was without ‘incident’ - which should be the norm but clearly isn’t - and since then the hospital has had to change my appointments from time to time but have always received a new appointment very quickly. I would say I’ve been lucky but the reality is that the service I have received is what everyone has a right to expect, luck shouldn’t really come in to it.


#8

I have just come off the phone to the outpatients booking line. I was told I am in the “regular appointment” category, so not going to be put on any cancellation list.
At least I tried.


#9

Don’t give up - keep trying. Ask to speak to the Neurologists secretary who will be responsible for his appointments and think of a very persuasive reason as to why she should squeeze you in. I have done this on more than one occasion with success.
Good Luck, Gerrard