PSP and Macuna

[Seeker_12]

Hi does Macuna help in PSP related symptoms though lot of articles state that L-DOPA is ineffective for PSP but works for Parkinson's

[sunflower2412]

Hi Seeker_12,

I don't know the general rule, but for my father it helped a bit. I won't say it made him a lot better but it difinitely slowed the progression. I can see that he gets is worse when he doesn't take it .

I wish you a lot of strength and support.

Kind regards.

[Seeker_12 in reply to sunflower2412]

Thanks Sunflower2412. Did it improve his rigidity and speech?

[LuisRodicioRodicio]

Hi Seeker_12!

These are my informations about:

At this moment most of the types of PSP disease have not a scientifically proven pharmacological treatment which even slows progression but there are several experiences in progress in different hospitals that have not yet reached definitive conclusions.

Only some patients, type PSP-P (PSP-Parkinsonism) and during a variable time on the early stages (4 to 8 years), improve their bradykinesia and rigidity by taking Carbidopa/Levadopa/Sinemet. However if you didn't feel any difference then maybe it was not working for you and suffer from other variants of PSP.

Hug and luck.

Luis

[Seeker_12 in reply to LuisRodicioRodicio]

Hi Luis, thanks for your reply. From what I read and my understanding pharmaceutical Levodopa/Sinemet/Syndopa have different effects than L-Dopa occurring naturally in Macuna and apparently atleast in Parkinson's the effect of Macuna powder wane out and higher doses are needed to reduce the symptoms. Not sure if this is really true and applicable for PSP as well.

[LuisRodicioRodicio in reply to Seeker_12]

Hi Seeker_12!

This is the information I have:

"Pharmaceutical Levodopa/Sinemet/Syndopa are specific for PD and......for a few years in the PSP variant called "PSP-P" or PSP-Parkinsonisme.

After a few years that these medications have worked in PSP-P, they stop working and a classic phase of PSP symptoms is entered in which there are still no specific medications and only the symptoms that appear can be alleviated".

Hug and luck.

Luis

[daddyt]

Hi Seeker_12

It's important to note these are two different proteins involved with PD and PSP. Alpha-synuclein - PD, Tau - PSP. Mucun or Mannitol may have limited effects on PD symptoms, depending on the patient. There is no peer reviewed research showing its efficacy with PD or PSP. I don't think it hurts to try it. Levodopa Cardopa (Sinemet) has shown to have reduced the symptoms of bradykinesia in about 30-40% of PSP patients, depending on the variant. Its efficacy can lessen over time. My MDS has told me that a number of her patients went off the drug, then had better results the second time around. I have been on Sinemet for eight years and still benefit from its use alongside a daily exercise routine.

Tim

[Seeker_12 in reply to daddyt]

Thanks Tim

[binnyrox]

Hi

I have MSA which apparently does not usually respond to Levadopa. However my neurologist put me through a Levadopa Challenge Test and the “before and after” results were good.

He proceeded to put me on Madopar albeit a much stronger dose than Parkinson’s patients to be effective

I find Mucuna also gives a similar effect and I use Solaray Dopabean (with green tea for better absorption)

I just find the equivalent in Levadopa between Madopar and Dopabean and take the relevant equivalent dosage

Im not sure if this information is relevant but hope it helps in some ways

Take care, kindest regards

BR

[Seeker_12 in reply to binnyrox]

Hi Binnyrox, appreciate very much your response. My sister is not taking any pharma drugs and only herbal medicines.

[eaglet]

I was diagnosed by a movement disorder specialist who said it was my up and down eye movement that called iin

[eaglet in reply to eaglet]

Clued him in to the PSP I was falling so much that now I use a sit to stand with my electric wheelchair