Hi, I’m new to the site and looking for thoughts/advice for my mum and her diagnosis. My mum is 85 and has had a tremor for a while and last year was referred to neurology where she had an examination and then referred for a DatScan to confirm if possibly Parkinsons or essential tremor. She had her scan Oct 22 and has only just received a letter advising that her results “are in keeping with Parkinsons”. She has recently mentioned a couple of other symptoms.
We had chased the results several times and were told it can take 6 months which seems like an extremely long wait time with my mum watching for the post every day. She now has to wait another 6 weeks for a follow up which is going to be a telephone appointment. Does this timeframe sound about right?
Can anyone suggest what the next appointment is likely to be about. Would she need another physical examination or are they likely to start medication to see if it helps with symptoms to confirm diagnosis?
Hi and a warm welcome to our forum, @Jan69. You’re asking some important questions and I know that our friendly members will be happy to tell you about their personal experiences with this.
I can only imagine how frustrating this is. Wait times are very worrying and it’s hard not to get very anxious along the way. Good for you for having the presence of mind to chase your mum’s results. Have you had a chance to touch in with your GP to see what they have to say about it all? They may have something to suggest that helps the six weeks go by a little more easily. If you need someone to talk to while you wait, our Helpline advisers can be a great source of support. You can reach them on 0808 800 0303.
Wishing you both the very best
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Hello Jan69 and welcome to the forum. I wish I could give you some definitive answers to the perfectly reasonable things you are querying, unfortunately that is not the case.
One of the most shocking things l discovered on joining the forum a few years ago, is that Parkinson’s services are inconsistent across the country. It shouldn’t be like that, the NICE guidelines make it clear that people with Parkinson’s should have regular reviews, but for too many that is pie in the sky talk. This makes it difficult to comment on your timescale concerns. What I can tell you is that getting a formal diagnosis can be a lengthy and drawn out process. There is no definitive test for Parkinson’s and some symptoms are common to many other conditions, so it can take some time to eliminate options and leave you with a Parkinson’s diagnosis. It is fairly standard wording to be told the symptoms are in keeping with Parkinson’s; this is simply a means of saying the symptoms are what are commonly seen in Parkinson’s but since there is not a reliable test which can categorically confirm this, this phrase is commonly used.
As for the forthcoming telephone call, it is difficult to know what the purpose of this may be. I’m guessing here but it seems to me that her medical team do not see her as a candidate for immediate commencement of medication. Whether to start or delay medication is a question that takes up quite a lot of time here on the forum. Again there is no definitive answer, it’s more about what suits you, or in this case your mother. For most, the time to start taking medication is when it starts to affect their life and things that are important to them. As your mum hasn’t been prescribed medication up to
now, it does seem to suggest to me that your mum doesn’t need them at the moment and perhaps the telephone review is to determine how she is getting on and on the back of that call, it could be that medication is needed and be prescribed.
However all of that doesn’t really help you and your mother to navigate through the maze of diagnosis. There are a couple of things you may like to try.
If there’s a Parkinson’s specialist nurse in your mum’s medical team, contact him or her and ask what the telephone review is for, what form it will take etc and have to hand any questions you may wish to raise eg timescales.
If you don’t know whether or not there is a Parkinson’s Nurse on your mum’s medical team, it is worth contacting the Helpline ad they should be able to find out who covers your mum’s area and their contact details.
I also recommend you follow up the advice given by JaniceP.
You said your mum has mentioned a few other symptoms and I think it worth bringing these to the attention of her medical team - it may be something that makes a difference but even if it doesn’t it’s prudent to keep them informed.
You wrote that you chased the results several times. I suggest that you continue to do so as much as you can, not just for test results but generally - your mother has a right to know how things are progressing so keep asking of anybody and anyone involved with your mum. It will get sorted at some point but it doesn’t make it easy to cope with the length of time taken to get to that point
Sorry I can’t tell you much that will help but hang on in there, and try not to worry too much about the itimescales, the time will pass and hopefully things will be clearer after the phone review.
Hi, my mum has been in touch with her GP who is going to try and contact the hospital to request that her appointment is brought forward due to the length of time she has been waiting, so fingers crossed.
Thank you for the helpline number which I will also pass to my mum in case she wants to speak to anyone.
Hi, thank you for replying and the comments/suggestions. I have started to make a list of questions and will try and find out about a specialist nurse as another point of contact for my mum.
Hopefully things will be clearer after her next appointment.