Hi all, I saw a consultant at a private clinic in London on the 12th September after concerns were raised. He stated he was 80% certain I had Parkinson’s , and started me on Sinamet 12.5/50mg once daily. After feeling some improvement I contacted the clinic again and he has upped the dose to twice daily with the view to upping again to 3 times daily after another 2 weeks if tolerated, this was until I get my local referral for an NHS appointment. This was a hammer blow! I’m 66 years old and still working full time with a current mortgage, and can’t afford to stop working. I have a critical illness policy which may help me, but unsure if it will pay out on an 80% diagnosis.
Doing my research I have accepted that I have Parkinson’s, but it’s still a bit raw, I have no family history, but I have worked shifts for almost 25 years, has anyone else associated this with their diagnosis?
Hello maccadad59,
Thank you for sharing your story and we’re here to support. Our wonderful forum members may be able to provide some peer to peer support for you.
In the meantime, please know that we’re here to support you if you need us. Pop our helpline a call on 0808 800 0303 and our team are on hand to answer your queries and offer some support.
All the best,
Parkinson’s UK Moderation Team
Hello Macca … I was diagnosed in June 2023. I am also on Sinemet three times a day.
I too have found it helps me.
IF A PARKINSON’S DRUG HELPS YOUR SYMPTOMS THEN THIS IS THE BEST PROOF THAT YOU DO HAVE PARKINSON’S.
If you take Parkinson’s pills and it makes no difference then it is likely that you don’t have Parkinson’s.
There is a lot of guesswork from neurologists in this game.
I have had two different diagnosis from two different neurologists.
There are many different forms of Parkinson’s.
Best wishes
Steve2
Hi Steve2,
Thanks for your message, I will wait to hear back from the NHS to see how long the waiting list is before making any further decisions, but I have thought about going private for scans, but I’ve heard that some don’t accept them as definitive proof so I could be wasting my money?
I am into day 5 of Sinamet twice daily and keeping a diary of my progress and my Blood Pressure levels, so far I have felt cognitively better, and apparently I am walking better so fingers crossed that I can get back to work soon.
Hello macca …
I am 71 by the way.
A brain Mri scan is done to show whether something else is causing your symptoms. A datscan is done to measure the dopamine in your brain. May go part way to showing you have Parkinson’s. BUT a positive result does not prove you have Parkinson’s much as a negative scan does not prove you don’t have Parkinson’s.
Whatever the datscan result you will be put on Sinemet [the best IMO] to see if this helps your symptoms. But you are already on Sinemet so what is the point in a scan.
Other than giving you further proof that you are in our club, assuming you get a positive datscan.
I did have a datscan and a brain Mri scan on the NHS in June 2023. The NHS neurologist said the datscan results were positive for Parkinson’s. I have since had
2 further datscan expert opinions. One said I had a normal datscan, the other said it showed minor signs of Parkinson’s.
I play Indoor bowls … When I am taking Sinemet my balance is good and I can play
5 times a week. When I was off Sinemet for 2-3 months [as a trial] I could not play bowls every day and I had a number of falls.
I know Sinemet helps me. Case proven.
Any questions do ask.
Best wishes
Steve2
Hi again, as I have previously stated I am being titrated on Sinamet, just completed week 1 of twice daily low dose, 1st dose around 8am, 2nd dose 5pm. I am noticing a significant improvement after 2nd dose and was wondering how quickly anyone else was titrated and what dosage. I have been advised that should I tolerate the current dosage I can increase to 3 times daily in a fortnight, but knowing how much better I feel now after twice daily, I am tempted to take it to 3 times daily but don’t want to risk it.
Any medication experts out there who can help?
I wouldn’t be in a rush to increase your medication if you are getting a good result on your current medication. There are side effects to Sinemet. I found I had severe sleep issues and now only take 2 pills at 7.30am and 2 pills 1pm. I do not take my evening dose. I have found what I do works for me. But we are all different.
Best wishes
Steve2
Hi maccadad59, thank you for posting. We’re glad to hear that you’ve noticed a significant improvement. We’d recommend reaching out to your GP, specialist or Parkinson’s nurse to find out more about increasing your dose.
You can also read more about Sinemet and how it works on our website, which might be helpful: Levodopa (co-beneldopa and co-careldopa) | Parkinson's UK.
Take care 
Parkinson’s UK Moderation Team
Hi thanks for the response.
I am still awaiting the referral to my local NHS Neurologist, and my GP has said in the interim period he will be led by updates received from the private doctor, but there is a limit to his involvement unless I continue to fund it, which I would if affordable.
Can you self refer to the
Parkinson’s nurse team?
I’m not experiencing any side effects at present but realise things can change.
Thank you for explaining, maccadad59. We appreciate that you’re currently waiting for a referral. We’re here to help you. If you call our free, confidential helpline we can put you in touch with one of our Parkinson’s nurses who can offer their advice and guidance as you navigate the change in your medication. It’s free to call and totally confidential: 0808 800 0303
Parkinson’s UK Moderation Team