Hi. Chris aged 60 newly diagnosed with PD. I was diagnosed by a neurologist privately and prescribed Madopar 100/25 hard capsules x3 a day.
These are having little to no effect on my tremors.
I’ve been told I now may have to wait upto a year to see a neurologist under the national health.
If I need a medication review I’m going to have to go private again. I’m on leave from work and I’m getting very stressed about my health issues and employment etc.
Hi Chris,
Your GP should be able to refer you to a Parkinson’s nurse who can help with meds. I can email my PD nurse who gets back to me within a couple of days and is a big help.
I hope that you’re able to get the same help because Neurologist appointments are usually 6-12 months apart which doesn’t help when newly diagnosed.
Good luck and let us know how you get on.
Hi Chris,
I completely agree with Dawn, please contact your PD nurse and they will help you. I’ve copied the information for contacting some via the Website
It might be helpful to know that we have lots of information on our website that can provide insight and guidance around symptoms as well as management of these which can help guide conversations with medical professionals. You can read more about this here: Health professionals and Parkinson’s | Parkinson’s UK
We also have a helpline where we can put you in touch with one of our Parkinson’s nurses who can offer their advice and guidance as you navigate through Steve’s diagnosis. It’s free to call and totally confidential: 0808 800 0303.
Maybe worth contacting them took
Hi Chris,
Leavadopa medication may not work for
tremors it is a bit hit and miss some PD patients respond others don’t.
Try not to get anxious as this can increase symptoms.
Afternoon Chris … I am 71 and have Atypical Parkinson’s. Diagnosed in June 2023. I was
put on Madopar first which did not work for me at all & gave me a hot brain. I was put on Co-careldopa, aka Sinemet, about a year ago & it helps a lot. It really does work for me.
Any questions do ask.
You can always speak to one of the excellent Parkinson’s nurses here. It is free.
We are all slightly different in the symptoms we have and the medication that works for us.
Best wishes
Steve2
Thanks for everyone’s input and suggestions.
I have been told I would not be appointed a Parkinson’s nurse until I am in the NHS bubble.
I desperately need a medication review but my Gp says he has referred me twice to the same hospital and cannot do any more.
I feel like I’ve been told, you have Parkinson’s, take these pills and get on with it.
And work are talking about paying me off. I can’t afford to finish work. I’m only 60 and any payout would not last until my state pension starts. I’ve spoken to a Parkinson’s adviser who is very helpful but still unable to get me seen under the NHS. I’ve been told I could have to wait a year until I reach the top of the waiting list.
What doesn’t help is the hospital keep sending me letters asking me if I still want to stay on the waiting list or have I been cured.
Hi Chris … I would suggest getting back to your neurologist and telling him or her that you are not getting on with Madopar and ask to try a different medication. You might ask to try Sinemet, the drug I am on.
This is very much a trial and error game. There is nothing else other than healthy living and exercise.
You might ask for a datscan.
Steve2
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To get back to the neurologist will cost me another £250. I can’t get on the NHS. They have just today said that the referral department of neurology has referred me back to my Gp stating my gp could offer me a different course of action. Whatever that means.
One thing I did was to become a member of Benenden Health. Costs me £15.85 a month and after 6 months membership I have free access to consultants. Even for existing conditions. If you can get the same consultation on the NHS in the same timeframe then you have to go the NHS route. I have had 4 consultations in the recent 3 months. Enables me to see a neurologist for free with only a ten day wait.
Worth looking at.
In my experience doctors do not like prescribing Parkinson’s medication, but you could try.
Another idea might be to email your private neurologist and tell him you are not getting on with Madopar and want to try Sinemet, can he send a letter to your doctor authorizing this. You are not having a consultation so he will not charge you the same fee.
Best of luck.
Steve2