Hi, Does anyone have experience in taking mucana on it’s own and if so how effective is it and are there any side effects? My husband was diagnosed 2 years ago. He isn’t taking any meds but his physical state has now deteriorated so badly I don’t think we can carry on like this for much longer. His main problems are freezing, which can last for 20 minutes plus, total lack of balance and walking. He is only able to manage 3 or 4 tiny “steps” before he stumbles and has to grab on to something, furniture, the wall , me , before he falls. Then the freeze sets in again! He only has a minor tremor but is enjoying the rest of the delights Parkinsons’ has to offer. Extreme fatigue, loss of speech, no muscke strength, drooling and chocking on food. Joy! Your feedback would be most welcome

I started taking it just over a week ago it’s magic!

I better start by saying I have no idea what’s wrong with me I don’t think it’s Parkinson’s but maybe dopa responsive dystonia. Everyone just says I’m interesting but don’t know what to do with me.
If you have Dopa responsive Dystonia they test you by giving you L-Dopa and if all your symptoms clear up you must have it.

I have very tight and short muscles since a teenager these past few months things have progressed and it’s like my legs are swelling up with increased tension all my walking is getting gradually worse and my feet have been inflamed or maybe in spasm.

Within 20mins of taking a Mucana tablet all the tension went, all my stiffness have gone, I have loads of energy, I am far to happy my colleagues can’t cope with how happy I am. I can run again, I walked the dog 3 miles last night (I couldn’t even walk a few hundred yards a couple of weeks ago) and my hand writing has improved.

I went to the GP this morning but she has never heard of it as I was worried the stuff I bought on Amazon is a really high dose. I read a book about Mucana v Parkinson’s medication and his argument was that mucana is more natural and better for you but he says some neurologist won’t agree because Mucana hasn’t been NICE approved but you should discuss it with them.

Hi, interesting. Thanks for that. Which brand are you using? Mitch

The brand is called Now it’s the only one on Amazon it contains 120mg of L-Dopa though which is mega high and in the book says should only be used under supervision of a neurologist, yet they sell it on Amazon!! I have just ordered these which are 50mg the same as half a simenet tablet.

I have started to take it intermittently so my body doesn’t get to used to it I took it for a full week, then had 3 days off and two days on. I’m going to have a break again for a few days now and see how long my symptoms stay away for.

I’ve written to my consultant who has no idea what’s wrong with me saying errrr can you please explain this I can’t wait for his reply.

Hi mitch 1 so sorry to hear about your husband do you have a pd nurse? If not you really do need to get one if you ring helpline number they can find one in your area plus give you help and advice hope this helps as there are many different drugs out there and no two people who react the same please let me know how you get on

Hi Pete,
Thanks for your reply. He really doesn’t want to take any drugs. Every time he has, he gets all of the side effects, so, understandably , he is worried about experiencing the nasties associated with sinemet etc.
After a year of fighting to get a PD nurse we realised what awaste of time. Seen her twice and explained why he wanted to avoid drugs. It was like talking to a brick wall. Her final comment “well I don’t know how I can help you” She made an appointment for him a year later, next July. I don’t see any point in wasting my time going to it!

Hi sorry to hear your pd nurse was no help I can only say the two I have had have been superb is there another one close by as I think most people on hear would agree a good pd nurse is essential try helpline they may find someone for you as for drugs yes there are side effects but there are quite a few options and not everyone gets problems been told new drug available in new year can’t remember the name
but am hoping to get it in Feb I would urgm e you to persuade your dad to keep trying tablets

I think we have both had enough of the PD circus.
Bottom line is we are alone and need to face the fact the only “help” on offer is drugs. Ultimatly it’s my husbands’ decision I can’t persude him to try the crap that has a high possiblity of screwing up his brain.
Do let me know what the new drug is and how you get one with it.
Regards Mitch

Hi of course I will keep you posted on any news I’m hoping for my pd nurse to call me this week so I will ask for the name of the tablets I know how hard it is for you both I’m NINTH one of my family who has had pd none of us have been on same medication so I would urge you to keep trying there will be a tablet that will help you if I can help please get back to me anytime

Nine, that’s tough! Good luck with the nurse and have a lovely Christmas

Merry Christmas and a happy new year to you and your family if I can help you with anything just ask

Seems like you’re both suffering more than necessary. Let me share my story with mucuna.

I became symptomatic about ten years ago–mainly with tremor, slowness, and drooling. I did not want to take anything like Sinemet because of the side effects. After some research I started taking 1/4 to 1/2 teaspoon of mucuna pruriens powder in water. The powder was from Banyan Botanicals. However, it had little to no effect, so I increased the dose to one tablespoon. Because the dose was still too low, I looked for a stronger dose.

I found 650 mg capsules with 40% l-dopa extract. That worked really well when I took four capsules twice a day. I experienced two side effects: nausea with some vomiting in addition to very strong sleepiness. Fortunately I found that eating pickled ginger before taking the capsules prevented the nausea. Moreover, the mucuna treatment lasts about 3 to 4 hours, after which time I crash with tremor, slowness, drooling, and difficulty speaking that lasts about two hours. Nevertheless, I continued that dosage till the present, the net gain in relief from symptoms making it worthwhile. Subsequently I discovered 100% L-dopa powder at Nutravita. I need take only 1/8th teaspoon with water twice per day to get the same results as with the 650mg capsules but without the nausea. This dose lasts 3-4 hours during which time I function nearly normally plus I am less sleepy.

May you both be free from suffering.