Hi,
After 2 years of telling the Neurologist that I feel very stiff, have pain in my legs and back, loss of smell, left arm tremor, dizziness and low mood he didn’t diagnose me for anything but did say it could be Parkinson’s so arranged a DAT scan.
As I expected the scan showed that I do have Parkinson’s. I know that I am probably lucky to have had a scan because it isn’t something that is done routinely but if I hadn’t have had it my next appointment with Neurology is June 2026!
Strangely I feel relieved to get my diagnosis but also feel scared of what lies ahead taking Meds and how they may give me bad side effects.
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Good morning Dawn … Probably taking Parkinson’s medication & finding it helps control your symptoms is the best proof that you have Parkinson’s. I am 70 years old & had a datscan in June 2023 showing that I was positive for Parkinson’s. I started on Madopar which I didn’t get on with, then another drug which didn’t help & then Sinemet aka Co-careldopa which does help me. I’ve been on Sinemet for 6 months, the only side effects are sleep related. Nightmares, insomnia & REM sleep. I am on Clonazepam & Melatonin for that which does help.
Any questions do ask. Don’t forget to tell the DVLA.
Best wishes
Steve2
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I too felt relieved upon getting a diagnosis, I’m not feeling to fearful of it yet as I don’t want to fear the unknown. Generally I’m just plodding along as before and as best I can with the knowledge of what’s causing my aches, pains etc
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Thank you for replies and yes it is a case of plodding on trying out the meds in hope that something helps with the pains and stiffness.
I’ve found out that there is a PD group that meet each month locally so I’m thinking of joining. I did consider going along before now but felt a bit of a phoney because you can’t tell by looking at me that I have PD!
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Mines Young onset Parkinson’s,
When my neurologist said I’m regarded as being young, I thanked him and said it’s nice to be called young at my age (grand young age of 51) 
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I’m 65 and not able to work because of pain but too young yet to get my pension!
It seems that sinemet is one of the meds that works for a lot of people but my neurologist has offered ropinirole which is one that doesn’t seem as popular?
Hello Dawn … I also take Ropinirole with Sinemet. Only started with it about 4 weeks ago. Nothing bad to say about it.
Best wishes
Steve2
Hi again Steve,
Can I ask why you are taking both please?
I started off with 1 Sinimet pill once a day for a week, then 1 Sinemet pill twice a day for a week, then 1 pill 3 times a day for a week & then 2 pills 3 times a day for ever.
Sorry … ROPINIROLE was a drug I took but stopped. The second Parkinson’s pill I take is Rasagiline.
- Common questions about ropinirole
1. About ropinirole
Ropinirole is a medicine used for conditions that affect the way you move. It is used to treat the symptoms of Parkinson’s disease and restless legs syndrome.
If you have Parkinson’s disease, ropinirole can improve symptoms like shaking (tremors), slowness and stiffness. If you have restless legs syndrome, it helps control your leg muscles.
Ropinirole is only available on prescription and comes as tablets, including slow-release tablets.
2. Key facts
- If you’re taking ropinirole for restless legs syndrome, take it just before you go to bed.
- You’ll usually start on a low dose. This will be increased gradually to help reduce side effects, like feeling sick.
- Some people find that ropinirole makes them fall asleep suddenly. This is more likely to happen while your dose is being increased. Do not drive, ride a bike, or use tools and machinery until you know how this medicine affects you.
- Other possible side effects include twitching or twisting movements (dyskinesias). Your doctor may try changing your dose if this happens.
- Do not stop taking this medicine suddenly. If you need to stop taking it, your doctor or specialist nurse will reduce your dose gradually.
Best wishes
Steve2
Thank you Steve that’s very helpful information, can I ask why you stopped using ropinirole please?
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My neurologist was a locum from Armenia. He had prescribed Ropinirole & on my last visit to see him he asked how I was finding Ropinirole. I had only been taking it for
7 days. I said I felt no different. So he stopped it & I was now on no Parkinson’s medication. He then left & my Parkinson’s nurse suggested I try Sinemet so I did & noticed immediate improvement.
This really is a trial & error game. You try a drug if it works great, if it doesn’t you try another drug. No other choice. If you get side effects then further drugs to combat the side effects.
Best wishes
Steve2
Thanks again for replying so quickly Steve I am finding this forum very interesting and helpful.
Us coffin dodgers are very interesting.
Steve2
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Hello Dawn there is YOPD zoom meet up the first Thursday of each month if you would like to join us 
Good morning and thank you for the invite, I’m 65 so probably not considered to be Young!
Hello Dawn, age is just a number! Feel free to join if you are interested
Hello again,
Just feel I want to share this with you all .
I had my first appointment with my Parkinson’s nurse yesterday and I got very teary because at last I was going to get help managing my symptoms! She has put me on Ropinirole and I just hope it works for me, it’s very likely that I will be taking another type of medication alongside it in the near future. But what I am so relieved about is that she is there for me and up until now I felt like it was going to be a very time before I got any help.
In my previous post I mentioned that I had a DAT scan which showed very definite PD and if it wasn’t for this my next Neuro appointment was June 2026!! So I wouldn’t have been referred to my lovely PD nurse for a very long time.
If anyone reading this is in similar circumstances I would really urge you to keep asking your GP to be persistent in asking for a Neurologist to see you and maybe get a DAT scan done.
Best wishes
Dawn59
Hello Dawn … I’m pleased you had a datscan, like me your datscan was positive for Parkinson’s, do remember this isn’t 100% proof of Parkinson’s. More proof comes comes when your medication helps your parkinson’s symptoms. I’m on Sinemet and am certain this has made a difference. Do be aware that some people have side effects to the parkinson’s drugs we take, as I do.
I would suggest you make regular appointments to see your lovely parkinson’s nurse. They can get very busy. I have an appointment every 6 months which is ideal.
Best wishes
Steve2
Hi steve2 i take clonazepam & madopar, but i was told no alcohol. Not that i drink a lot but i used to have maybe 3 drinks, at a wedding etc all day/night. But, Its like all things , once youre told you cant have it,you want it😊