and thought I was going to have to call 911. I took 1/2 a tablet of a 500mg Mucuna tablet that tasted like cow dung. Within minutes my vision went weird and I started having heat prickles internally. I got the worst foot dystonia that I have ever had and gripping leg pain and rigidity. My legs started vibrating like they wanted to take off in flight. It was a nightmare. This is similar to what I experience with Sinemet L-dopa RR and CR on a lesser basis.

I wondered if this is another indicator that my brain cannot tolerate dopamine and does not want it. As I have stated in other posts I believe I was misdiagnosed after a fall. And at a extremely stressful time of my life. My neck has been out for years and when I walk I have heat radiation down my legs and they go numb and I have to sit down. My neck x-rays show that I am out over 27% in spinal alignment. After seeing a natural path with a PhD in this field who said "there was not a hope in hell that I had pd" and yesterday a psychiatrist who had me go through extensive cognitive testing (I got 100 % by the way.... this is a personal reaffirmation to those in the health field who said I was emotionally unstable) along with the usual how I have lived my life questions. The two partner teams conclusion was (like I have always thought) there is something else going on. Most likely a big emotional component combined with a skeletal problem. I have always been a rigid person in my habits driven by high adrenaline. I covered it up with a 'whatever' attitude. You end up paying for that in the end.

I am being referred to a neurological/psychiatrist, top of the food chain at the Movement Disorder Clinic University I have been involved with. I am trying Vitadopa next as I continue to reduce my dopamine medications on my quest for health.

This post is an information post.

dear smithclayriley,
I do not feel we need this -so sorry it made you ill...


I know many do use it but it isnt on my agenda...
I vomited with Sinemet, so no way on this -

Good thing you didn't take the whole tablet!

Sorry that was so hard on you. Hope you can find some answers and something to help you feel better.

And just in case I missed you earlier: Welcome to NeuroTalk!

That's what I thought! (about taking the whole tablet). I could hardly make it to water tap but got there on sheer will power and started drinking lots of water. I thought here we go again for crying down the alley.

Thanks for the welcome.

First of all, you probably were not taking mucuna. I know. I know. But this is something that I ran into back when Ron Hutton and I tried it out in prehistoric times. Mucuna is bulky and a powder and you take it by teaspoons.

But some manufacturors concentrate it and, I suspect, even add ldopa to it and press it into tablets or put it into capsules. And it was not your imagination, either. I had a couple of "interesting" days back then. In fact, that is why I dropped my original trial. I figured that if I just wanted ldopa that I woulde be better of with sinemet. Besides, the manufacturors fixation on the ldopa meant that whatever other ingredients were there in the beginning had been left out.

I'm glad you are OK.

Tena, after being diagnosed, put on Sinemet to help confirm the diagnosis after 4 days I telephoned the neurologist and said "if I didn't have Parkinson's I do now. I couldn't walk or talk. I said I wanted a second opinion. I went to a renown neurologist at a Movement Disorder Centre and on the way to his office I passed a ward full of patients in later stages under the neurological umbrella. It scared the hell out me. So I was nervous when I saw him although confident I would find out good news. I thought I flew through the tests skillfully so was completely shocked when he concurred with my original diagnosis. I believed him because of who he was. I was put back on Sinemet, only this time I had no problems. Classic case of 'your body believes everything you tell it'. My pd never got worse and I still have total upper dexterity and have not lost any extension or flexibility. My neck hurt and I had leg pain so they upped or added more drugs and I got a whole lot worse. Didn't help my neck and leg pain either.

Rick,

Thanks for the reply and info. All of you have been so helpful. You have no idea what a blessing this has been for me, finding this website. I ordered both types of Mucuna (one is Zandopa from India which I think you are referring to and the tablet form from California) on a recommendation from someone who was in the Recovers program for 5 years (Janice Walton). He found the tablets worked well although he is taking the powder now. This is where I got the tablets. Ever heard of them? You have my curiosity going which is a good thing.

Herbs Forever Inc.
501, S. Harvard Blvd. #2
Los Angeles , CA 90020
United States

Phone No. : 1-213-427-3500
1-213-291-8432
1-213-291-8160
Fax No. : 1-213-291-9712
1-213-383-3076
Web Site : http://satveda.com
http://herbsforever.com

Bonnie,
I'm so sorry you went thru this experience - sounds nasty. I really am feeling desparate for qualified medical information from sources who aren't paid by Pharm to tell us, or that can integrate traditional medicine systems into a contemporary context. Seems like we have nowhere to turn to try and right the wrongs of the system. I, too , felt like when I first got dx'd, at age 32, the very lovely neuro said , "Well, it kinda LOOKS like it's similar to early Parkinson's... why don't you get a second opinion?" But with that second opinion I was fed into the PD machine, and my body sold to the drug companies. ANd I still think I might not have had it because I look at my videotapes of myself from back then and I had something, but I don't think it was really PD. Because now I know what I'm looking at when I see PD. ANd now that I've been on all these drugs for so long, you're right, I have that drug-induced PD. Back then they said, we'll have a cure in five years, go ahead take the meds. That was 16 years ago....I so wish someone had taken me in hand and encouraged me to think differently at that time, but I was so scared and felt so alone.

Bonnie, there's got to be a way out of this for us. I will go to the ends of the earth to find it, literally.

Mucuna - it's been up and down for me - I've been using that stuff from the VItamin SHoppe, but I think I will order Zandopa, because it might be more comprehensible to my doctor. BUT the ups are really up, and from when I first started taking it -well, at first I got scarily dizzy and had to lie down for a day or two. But then when I got acclimated, and tinkered with doses, I felt and feel so good when I'm good - it just feels way more natural, my body is much calmer, and it's hard to explain but I feel some kind of innner network of support that's not just about dopamine. Everyone around me has been saying that I seem much better, despite the ups and downs...but even when occasionally I go WAY down, I can get back up to that better place, and that place keeps gradually improving. SO that's my one month report.

You may be right about your instincts about your body and extra dopamine. You sound pretty in touch with yourself. I say lissen, and take heed of its wisdom.....
Fiona

Hi Bonnie,
I'm so sorry to hear that mucuna gave you such a bad reaction. I was hoping this might be helpful to you. Sorry... The tablets I use from HerbsForever are only 250mg not 500mg. Doesn't sound like the same tablets? I too had some reactions if I take to much, I usually get antsy or hyper. A couple of times I had leg cramps. But overall it does works for me if I take the right amount. I've been on it for 1 1/2 years now.
I have to agree with you that this is another indicator that your brain cannot tolerate dopamine and does not want it.

Bonnie please take care...
Max

Max, hello, nice to hear from you. Thanks for the info and I will try and take care. I am giving an informal talk to some nursing students along with two others with pd at a Seniors Home Care Facility about what it is like to have pd and how we are on medication, how it affects us and any questions they may have. That came from the support meeting on Tuesday. Glad to be doing something useful again.

You take care yourself,

Bonnie