Looking for an answer

I wondered if anyone would be able to advise me if there is anywhere I could turn to to help with my diagnosis. I have been diagnosed with Parkinson’s for 4 years, (I am 50 now), but at roughly the same time, I developed an issue with eating protein (any source - meat, dairy, eggs, nuts, pulses) where I get severe burning pain in my arms and legs about 2-3 hours after eating protein. I don’t know if it is linked to my PD or separate, but I can’t seem to find anyone who can help with this issue and my condition seems to be unknown. I have lost a lot of weight and muscle, which doesn’t help with the PD. I am now well over the honeymoon period with my PD symptoms also and alternate between being immobile and in pain and having dyskinesia. I want to stay strong for my wife and sons, but I fear the worst if I can’t get a diagnosis.
Many thanks

Hi there, I don’t have any of your symptoms but eating protein knocks out the effect of levodopa it puts me on my back side so I double up on sinemet at meal times

Many thanks for replying. I have come across a few people who have problems with levodopa not working when they eat protein, but never the pain. The best description that I could give the pain is peripheral neuropathy and it always comes on about 3 hrs after I eat protein and lasts for about 2 hrs.

Hi @i_mcewan,

Some people with Parkinson’s find that protein seems to interfere with how well levodopa is absorbed by their body which I think is in line with what @islaeloise was saying. Because of this, you may benefit from taking your medication 30-60 minutes before you eat a meal. We have more information on protein via our website here - https://www.parkinsons.org.uk/information-and-support/your-magazine/why-protein-important-people-parkinsons.

For more information and support, please give our helpline a call on 0808 800 0303.

Best wishes,