Good afternoon everyone. I had a positive DATscan about 7 months ago & I was diagnosed with Atypical Parkinson’s. I briefly tried both Madopar & Ropinirole & then came off them. I saw my Parkinson’s nurse today & was told that my Neurologist has returned to Armenia for personal reasons. My Parkinson’s nurse has put me on Sinemet. Starting with 1 pill a day for a week, 2 pills a day for a week,
3 pills a day for a week & finally 6 pills a day till a review in April 2024.

My Atypical Parkinson’s symptoms are mild apart from my legs freezing & incredibly tight / numb leg muscles that make walking a real challenge. I also have diagnosed Peripheral Neuropathy … So my leg / walking issues could be either Peripheral Neuropathy or Parkinson’s or a combo of both.

Has anyone had experience with using Sinemet for their walking difficulties please?
Would like to hear about both positive & negative experiences.

My Parkinson’s Nurse told me that my Neurologist was not a Parkinson’s specialist
which is probably why I have been on no Parkinson’s medication.

Best wishes

I dont know if it is different in different parts of the country but here in Plymouth once you are diagnosed you see a consultant a couple of times and certain meds are tried -in my case Madopar which seems ok with me so far - and are given a number to call to access the dedicated parkinsons team and have email addresses you can contact them on, and get assigned a parkinsons nurse whom you can contact as and when you need to. Everyone I have spoken to since my diagnosis has been a parkinsons specialist, fully clued up about the condition and meds available. It is unfortunate that this does not seem to have happened in your case.

Good morning srb7677 … I think I have been treated well by the professionals. I have
only had this Neurologist for about a year & within a couple of months I had, on the NHS, an MRI brain scan [clear], Spine MRI scan [clear] & a Datscan [positive for Parkinson’s]. So I am very grateful for the treatment I have had from him. He also diagnosed my Peripheral Neuropathy & its successful treatment.

If you go online & look up Atypical Parkinson’s you will see that it doesn’t respond well to drugs. His opinion was that there would be no benefit for me taking them & these drugs have potential side effects, do in his opinion not worth the risk.

Now my Parkinson’s nurse feels I should give Sinemet a try for 6 months & see if it helps my mobility. He says I have nothing to lose.

Best wishes

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I am please that your experience was a good one after all, and apologies for assuming otherwise

Which of the various conditions within the Atypical Parkinson’s does your Neuro think that you have?

Hello Douglas … Well he has just returned to Armenia & won’t be coming back. He had no idea what Atypical Parkinson’s I have.