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
Time for an update, so now I am on Sinemet same dosage x4 daily with 8mg Ropinirole taken with my 1st dose of Sinemet at 0800 hours and the difference in me is remarkable according to my family. I have finally been seen by a NHS Neurologist who has arranged for an MRI, and I am now coming to terms that I can live a relatively good life (minus my passion for real ale) with minimal modifications.
I have been more of a lurker on here while researching and reading lots of papers on PD, but if I can just say to any newly diagnosed, don’t be shy ask for advice, don’t let it define who you are or what you can do, consider it a game to win!
Much love to you all.
Hello @maccadad59, thank you for sharing an update. It’s great to hear that your family have shared that they can see a positive difference with your new medication and that you’re getting support and tests done by a specialist.
We appreciate your support for anyone exploring getting a diagnosis or who has been recently diagnosed.
We are here for you if you ever need us.
Take care 
Parkinson’s UK Moderation Team
There are so many people that take Parkinson medication without any relief.
Does that mean that none of us have Parkinson’s? From what you are saying, doctors need to up their game considerably.
Good morning Nigel .. Since my last post on this topic I have stopped taking my Sinemet. I did see a neurologist privately who queried whether I had Parkinsons & he suggested I no longer take the medication as any very minor benefit would be offset by the long term downside of taking this drug. I stopped about 6 months ago & have noticed no difference. I still take Rasagiline though, just 1 pill a day.
I was diagnosed with Atypical Parkinsons about 3 years ago my a fairly clueless foreign “locum“. As you will see below Atypical Parkinson’s does not respond well to Levodopa / Sinemet.
I still get fairly severe gait freezing, I do over balance now & again. I can shake violently when carrying a coffee or plate of food in a cafe, but not at home. The gait freezing is constant, all it needs is for me to stand still for a couple of minutes & then I am frozen to the ground & that is when I often fall over.
So I am content to be labelled as having “Atypical Parkinson’s“ & I realise there is nothing that can be done for me.
I get very breathless when tying my shoe laces & going for a very short walk & get a bad headache that goes when I sit down & am seeing an NHS neurologist about this. No doubt she will look into my Parkinson’s diagnosis. I have had a phone consultation with her & she wants to see me.
I think saying a patient has “Parkinson’s“ is a lazy diagnosis, I bet a lot of us have something else. But that would take up numerous tests, cost etc & the NHS cannot afford that.
Steve2
The 3 main categories of parkinsonism
Each category contains multiple specific conditions.
1. Idiopathic Parkinson’s (the classic form)
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The most common type (about 80% of cases).
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Cause unknown.
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Typically responds to levodopa.
2. Atypical Parkinsonism (faster‑progressing, often levodopa‑resistant)
Includes several distinct disorders:
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Progressive Supranuclear Palsy (PSP)
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Multiple System Atrophy (MSA)
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Corticobasal Degeneration (CBD)
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Dementia with Lewy Bodies (DLB)
These are the conditions most often referred to when someone is diagnosed with “atypical Parkinson’s.”
3. Secondary Parkinsonism (caused by another condition or factor)
Includes:
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Vascular parkinsonism
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Drug‑induced parkinsonism
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Toxin‑induced parkinsonism
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Normal pressure hydrocephalus (NPH)
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Post‑traumatic parkinsonism
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Post‑encephalitic parkinsonism
So how many types are there?
If you count the specific conditions:
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Idiopathic Parkinson’s: 1
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Atypical Parkinsonism: 4 main disorders
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Secondary Parkinsonism: 5–7 commonly recognised causes
Total: roughly 10–12 distinct types, depending on classification.