Does Mannitol work?

[1TonyS]

Diagnosed a year ago at 72 although constipation and lack of smell for 10 years. Walked slowly and lack of energy were restored with 25/100 Sinemet. Am very active playing golf (walking) 4 times a week and cycling 3 times (15 miles). Taking Mannitol and all symptoms have gone except a slight tremor in RH leg when stressed.

[Astra7]

Great news. How much are you taking? I'm taking just a teaspoon a day (building up slowly) and I've had quite a few excellent days, though the odd bad one still pops up. Not sure if it's the mannitol or not!

[alexask]

This is good news. I posted on Parkinson's UK website about Mannitol and there is a doctor there very dismissive of it.

One thing he does say is that it does tend to suck water out of the system, so if taken to excess can lead to other issues down the road:

"..In any event, regularly taking an osmotic laxative can lead to significant electrolyte imbalances, some of which are highly dangerous, colonic stasis or paralysis, and there is an increased chance of colon cancer. That’s a bit more real science.

Good luck with that then.

"

I don't think the required amounts of Mannitol that benefit PD are large to impact, but do make sure that you are well hydrated before taking this.

Also which benefited you most the Mannitol or the sinemet?

[alexask in reply to alexask]

sorry that should have read the required amounts of Mannitol that benefit PD are small to impact

[1TonyS]

I am taking 2 heaped teaspoons per day, which is the optimum for my weight on Clinicrowd.

The question as to which is more effective Sinemet or Mannitol requires a controlled experiment. My gut feeling is that Sinemet controls energy, speed, and tremor. Mannitol, after a month or two, controls smell, constipation, biting mouth etc.. As I said with Sinemet and Mannitol together, all symptoms have gone except under stress, which is best avoided. I have just returned from a month playing golf in Australia. Jet lag is a problem with Sinemet but it soon settles down.

[Astra7 in reply to 1TonyS]

Where were you playing golf?

[1TonyS in reply to Astra7]

We played 15 different courses between Mooloolaba North of Brisbane and Coffs Harbour to the South. Memorable courses were Royal Pines where the Oz PGA tournament with Sergio was held 3 weeks after. We also played Bonnville. Why are you interested? Do you also play golf? I went through a really bad spell before Sinemet but now are playing really well, which is surprising. I never know if it is the exercise I do or the Sinemet or Mannitol but my symptoms are now minimal.

[Astra7 in reply to 1TonyS]

I just wondered if you had come to Perth. I don't really play but I enjoy whacking the ball at the driving range at a near by golf course! Very therapeutic though I have a dreadful slice!

I play tennis and am also improving which is nice. Azilect and madapor along with a ton of supplements keep me mostly ok at the moment!

[Farooqji]

Not working for me

[Xenos in reply to Farooqji]

For how long have you been taking it ?

At what dose ?

When in the day ?

Thanks.

[Farooqji in reply to Xenos]

1 table spoon (10 grams ) in the morning with tea for the last 3 months

[Xenos in reply to Farooqji]

Thanks iqbaliqbal. I've done the same, with my morning coffee for 9 month.

Recently, I was taking it two times a day for one month to see the difference. The half life of mannitol in the blood is very short (something like 110 min).

[Farooqji in reply to Xenos]

Did you feel any difference

[Xenos in reply to Farooqji]

Between 9 g and 2 x 9 g, not really. And I think that the people behind CliniCrowd, like Pr Daniel Segal, are smart enough to give us the best possible guess relative to doses.

Between mannitol vs no mannitol, I feel a difference, but maybe that is subjective. It's as if the disease was stopped in its tracks and some symptoms were receding. Very hard to tell. It's nearly one year since I began mannitol.

[Farooqji in reply to Xenos]

Sometimes I get cynical about the intentions of the people running the clinicrowd

[Xenos in reply to Farooqji]

I think it's real, even though I remember having thought "maybe it's the largest placebo effect experiment ever".

Read the seminal paper in PubMed by Daniel Segal.

[Farooqji in reply to Xenos]

They don't clearly publish the results of the experiment on their website

[Xenos in reply to Farooqji]

They are publishing some statistics about PD already e.g. 50% of PWP's suffer from loss of smell.

They wait for a statistically significant number of answers before analyzing the data when it comes to mannitol. I agree with that.

My guess is most people do not follow the rules and do not fill the questionnaire every month...

[Farooqji in reply to Xenos]

you are right. I too have not filled the feedback yet

[KERRINGTON in reply to Farooqji]

Hello...is mannitol still helping you ?

[Farooqji in reply to KERRINGTON]

no effect I feel

[1TonyS]

1 teaspoon with porridge for breakfast, one with yoghurt after dinner.

Since April.

[alexask]

What is the longest anyone has taken this? I still think it benefits me greatly, but was just wondering whether this is a flash in the pan, or whether there is anyone who has been taking this for 2 years or more and still seeing benefits.

[Hidden]

"and lack of smell for 10 years" now because a recent Post referred to our body smelling like Parkinson's we will need to be more specific.

[M-o-ggy in reply to Hidden]

Hi there. Is there a Parkinson smell?

[KERRINGTON]

Hello ! Is mannitol still helping you ?