medication and supplements for MSA?

[Trudy2020]

what medication are people taking ? Are you taking sinemet or mucuna? Do they help?

I was diagnosed with Parkinson’s in2020.””and MSAP in December 2022. My main problem is heavy very unsteady legs!painful pins and needles in the toes .

Thanks for any suggestions

Chin

[Paul_and_Sue_Wood]

Hi

My wife's main symptom is skin pain which she describes as being plunged into a scolding bath of hot water along with pins and needles. We manage this pain using nerve inhibitor drugs such as Gabapentin, or Pregabalin. Chat to your consultant about pain management.

Paul

[Trudy2020 in reply to Paul_and_Sue_Wood]

thanks for that Paul. I’ll check on that .

[TK-67]

The drugs you're prescribed will depend on your symptoms, everyone has very different problems. My mum had an original PD diagnosis and was on co-careldopa however it was when this stopped alleviating her symptoms and brought with it quite severe side effects that her diagnosis changed to MSA. Over the next couple of years it was reduced quite drastically which did help. She was also on medication to help with her BP which varied massively, something to help with anxiety. It really does go with need and is very much individual and a lot of trial and error...

[Trudy2020 in reply to TK-67]

yes it’s so frustrating! I was on sinemet when it was Parkinson’s. It didn’t do anything! Nd I wasn’t keen on the long term side effects of dyskinesia. So I stopped and weaned on to mucuna. It lifted up the muggy head but I still have the heavy wobbly unsteady legs!!

Now just taking supplements and mucuna for what it’s worth!

[Hidden]

My husband was taking Sinemet and gabapentin. I would also suggest paracetamol which offered some pain relief. The one thing i would say is be strict with your meds, keep to a regular time. My husbands nerve pain was difficult to control if he was late or missed.Chat to your specialist nurse, they will advise you if something else or alteration to your dose is required.

Xx

[Trudy2020 in reply to Hidden]

I stopped sinemet as it was not doing anything but giving me a foggy head. I take mucuna instead- I feel a lot of it is trial and error p. Thanks for your suggestions. I’m

[LadyLins]

hello

I take Sinemet which helps a little and I take gabapentin 100mls in morning and tea time and 300mls night time. It does help but not as much as it used to. I prefer trying to use alternatives like pilates as it is really good for core strength and can be done even sitting down. I also dont have dairy. I drink Tiger Nut which ia full of vitamins including potasseum and magnesium which are great for the legs situation. Its my opinion its a combination amd include massage as well. Lins

[Trudy2020 in reply to LadyLins]

thanks Lins.I’m taking magnesium theonate.