New member offered CATScan should I have it or wait to be diagnosed by symptoms


#1

Went to my GP with a chin tremor, he recommended I see a Neurologist but as there was a long waiting list I paid privately to see one last week, I live in Lancashire. Neurologist did a lot of tests eg walking, touching nose, hand grips etc. He came to the conclusion that most probably it would turn out to be Parkinsons but as I only had one symptom at the minute he wouldn’t diagnose me yet or give me any drugs. He give me two choices, to see him under NHS in the future to check if I had anymore symptoms or have a CATscan. I opted for the scan but now I am thinking I should wait as if the scan was positive I would have to let DVLA know and maybe it would affect my licence. Also have to let my holiday insurance know. If I left it now without being diagnosed would that be better? He also said even if I had a scan and it was positive he still wouldn’t put me on drugs yet. Am I better to know or not as I am finding it very hard to accept and getting myself depressed. I am almost 72 but still look after my 3 year old grandchild two days a week. Excuse me for rambling on, not sure I have mastered the forum. It would be great to get some replies as I knew nothing about PD and am very worried how this will progress, thanking you in advance.


#2

Hi Gemsmum,

Welcome to the forum.
It’s understandable that you would feel depressed and worried about this. and we’re sure that some of our members will respond to you with their experiences soon. Meanwhile, it may be worthwhile to look at our Do I Have Parkinson’s pages with videos and information that may help with your decision. You can also call our Helpline for advice on 0808 800 0303 if you wish. We hope this is useful.

Best wishes,
Edwina
Moderation Team


#3

Hi @gemsmum. I was diagnosed 2 years ago after going to the GP because I had a tremor in my left hand and leg. I had the DATscan and did find it helpful that it confirmed the diagnosis. I reported the diagnosis to the DVLA and now have a 3 year medical review licence but was able to continue driving while the paperwork went through. Also so far the diagnosis hasn’t made any difference to my holiday or car insurance premiums (unlike my husband’s hypertension diagnosis which did increase our holiday insurance premiums).
Good luck anyway whatever you decide.


#4

Hi @gemsmum
I have read your post and I would like to tell you what my GP 's advice was to me when I suggested that I might have a private consultation with a neurologist.
He said that even if the neurologist suspects parkinsons he will only advise me to have more expensive tests and that I should spend my money on my family and myself first as being keen to know early would not change any medical decisions the specialist takes and that a positive datscan would merely be a sort of confirmation tool and that to date there is no definitive test for pd and a positive result would only let the neurologist know that its increasingly likely to be pd but not definite.
Reading between the lines of what your neurologist has said to you.
To me it looks like he is telling you to wait for the NHS appointment and given that a datscan costs around £1000…
Maybe you might consider spoiling the grandchild and having a nice holiday as your neurologist has told you that your treatment will not start any earlier than it has to probably due to the side effects of the medication.
So in summary it is up to you to ask yourself if knowing earlier would make a difference to the anxiety that you may be experiencing right now.
I wish you well on your journey and it is a journey through your neurological condition and hope you make the right decision for you.
Oh and Incidentally your post was perfectly mastered.
Don’t be a stranger
Tommy :pill: :pill: :pill:


#5

Thank you for the welcome, this is all new to me so I will be reading the forum a lot.


#6

Thank you Singing Gardener for the reply. I have a few weeks to think about it as I’m sure the appointment will not come for a while. I’m also thinking about going to see my GP for advice, he is very helpful. Good to know you still have your licence, I would hate to do without mine, kind regards.


#7

Thank you T1 for your helpful reply. The DATScan would be on the NHS so it’s not the money I’m worried about, or at least I think it would be, maybe I should check up on that!! I’m more of the opinion now maybe I should wait and see how things progress. Are you on medication, there seems to be so many different drugs and the side effects frighten me, but maybe I am getting too far ahead of myself!! Kind regards.


#8

Hi gemsmum.
Over the last three years I have tried so many meds with different side effects and also had my diagnosis changed three times.
That’s why I described it as a journey.
It seems like it depends on who you see.
Tomorrow I have an appointment with my third neurologist who is a neuropsychologist.
It’s just what happens you get passed around to someone else for their opinion
It can be very frustrating if you allow yourself to over think about it.
Much better to go with the flow.
That said don’t be a head nodder and accept everything you are told without question try to be confident enough not to accept an opinion of it looks like or it maybe or it resembles.
You’ll understand what I mean when you go.
The favoured way of diagnosis is generally trying the medication for six months and return.
If your symptoms don’t change then repeat the process on another medication.
But there are no quick answers and you will soon settle into the routine until they find the correct diagnosis and treatment for you.
Please have a look at a thread called maybe misdiagnosis.
It will help you see other people’s journeys and may help you to see that everyone has a different experience but at the same time showing that an early diagnosis may not be possible.
Also why not come and join our little gang on the insomnia thread where there is plenty of advice to be had and more importantly friends and fun.
It’s not all doom and gloom
I assure you.
Take care
Tommy :pill: :pill: :pill:


#9

My GP suggested to go private and the Consultant said I had Parkinsons Disease and would inform my GP what to prescribe me on the NHS because it would be cheaper for me but further tests done privately were never mentioned


#10

Hi. My husband has had Parkinson’s since 2011, we are in Lancashire too. Attend Lancaster hospital. He had a slight tremor in his left hand. Was put on Rasagiline 1mg once a day. We really think it helped, does not seem to work for everyone. In 2017 he started taking Co-Careldopa 12.5/50mg. We have not had any problems getting travel insurance and do not pay a lot of extra charge. Carry on with your life and enjoy your grandchildren, we do. Changes do happen but keep positive.
L


#11

Hi Gensmum

My instinctive response to your plight woukd be to continue on as you are. Scans may not 100% conclusive so you might still be left worrying. Enjoy your time with your grandchild and if your symptoms worsen then you will know when you finally need help. It really isn’t the end of the world - I am 6.5 years into it and still lead a very active life and you can to! Good luck and please try not to get depressed because it just won’t do you any good. A positive outlook really does help you cope with the bad days.