Hi all, I would very much appreciate some advice on my symptoms. I am not on medication yet but am taking mucana, b1, l-tyryosine, b complex and magnesium. I am a year away from diagnosis.
Is this typical of PD? My Dr. is unsure as well. He is going to probably put me on sinemet to see how I respond or send me to a movement disorder specialist.
I am most shaky with tremors in my shoulders. It's worse in the morning and progressively gets better as the day goes on. I have an action tremor and I would say 5% of the time a resting tremor. I have a tremor in my right leg not noticeable. I have a slight occasional neck tremor. My neck gets stiff and I tremor when I get cold. I do not have non. motor symptoms of PD but I have some partial loss of smell. I have some shoulder pain in my romboid at the shoulder joint and up into the neck.
I have also had slight symptoms of peripheral neuropathy.
Would Sinemet help with these things?
Thanks for your help!😊
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Hope-full1970
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hi, I would recommend seeing a movement disorder specialist before taking any meds, the Mucuna you take is straight Levodopa which does not always crossover the blood brain barrier, hence why Sinemet is recommended as it has the caridopa which helps the levodopa crossover the BBB.
I was fooled by thinking that a positive response to Sinemet was an indication of a Parkinson's diagnosis. It's not! It acts a lot like an opiod (but stronger) so anybody will feel "better" (even euphoric) at first. It will eventually give you parkinson's like symptoms (further confusing things) if taken. Inform yourself before getting hooked on it. Free online book "Once Upon a Pill)
Thank you so much for saying this. I will take this into serious consideration. I have always taken very good care of myself and always been all natural everything so I don't take the thought of taking a drug lightly.
Also, If you've never started the meds, the same author has a book for healing yourself from PD! It's published and available online : "Recovery from Parkinson's" by Dr. Janice Hadlock, DAOM
Thanks cceelen! I have been thinking about this a lot and your advice keeps ringing in my ears. I'll look this up. I have upped my natural treatments in the meantime. Merry Christmas!😃💓
When she refers to conventional treatment, do you know if that includes the supplement mucana? I was also on 1mg of resagaline for 6 months last year. Now I'm not taking the mucana. Very sporadically to test it out. Maybe I could email her.
She considers any form of dopamine (med or supplement) to be detrimental.... within the context of many other things. Nobody shuld abruptly stop any of these, that could be life threatening.
I know she gets swamped with emails which is part of why she wrote the books. "Once upon a pill" discusses all of the different meds in detail
It's free online (Once Upon a Pill) pdrecovery.org/once-upon-a-... but you need to print it out. I took it to be printed with a spiral binding, wish I had asked them to divide it in half, it's huge. Packed full of details about Parkinson's and the meds. Many case histories
For anyone with PD, checking their vitamin B values is important, but when Neuropathy occurs at the same time, a B6 test with a B2 test is possibly a must! Park_bear just wrote another post about this. Because you don't have Sinemet medication yet, so no carbidopa that can lower your B6 level, there might be too high a dose of B6 with toxic pyridoxine in your vitamin B- complex. Both a deficiency and overdose of B6 can be the cause of peripheral neuropathy.
Hi! I do recommend joining the Facebook group. And you can set up your own Facebook page with complete privacy so that no one sees what you’re doing! You get to decide how public you want your activities to be.
A fine safe dosage for PD if there are no major shortages. If necessary even possible 2x a day. No bioactive vitamins, so with B6 pyridoxin instead of P5P. You can't expect anything else with such a low price. Given the 1.7 mg dosage, that doesn't seem like a problem to me.
I went to 2 neurologists who were very uncaring and only spent 15 minutes with me.I decided to go to my PCP who has cared for Parkinsons patients for 30 years. He's definitely knowledgeable. He just said I don't look or act like any of his Parkinsons patients . He is just a little puzzled,so we are doing more tests .The way this all started was, I got the covid shot, my shoulder immediately went in to impingement, then frozen shoulder, then my arm started shaking. I would say yes, I have PD but the series of events in my life has made me seek clarity because my arm/shoulder still has issues.
I exercise all the time so that's probably helping me
Sounds like you're having a reaction to the Covid shot. My sister had a reaction and lost most of the use of one of her hands. It is slowly improving. They gave her a diagnosis, but the cause was the covid shot and they didn't make any mention of that. My cynical observation is that they generally don't like to admit that any medical treatment is the cause of anything.
I think her reaction developed over time, coming on mildly and then getting worse and worse. It happened about 2 years ago too, she has much better use of her hand now. She's done a lot of ocupational type therapy...
Green tea acts in a similar way to the carbidopa in sinemet to get the dopamine to the brain.
What is the b complex you are taking? Some have synthetic vitamins like cyano cobalamin and folic acid and pyridoxine .Make sure it has methyl and adenosyl cobalamin (B12) , methyl folate and p5p (b,6) or the synthetic ones could cause you issues.
The anxiety feeling from Mucuna might mean you are taking too much. My husband gets that if his madopar (levodopa) is increased too much .
My husband and son (who is a bit adhd) take Hardys Daily essential nutrients which has other vitamins and trace elements in it. They take the clinical dose of 12 per day.
Hardys reckons most people with health issues do better with mega doses of b vitamins except folate and b6 potentially. Maybe you need more not less?
ps I just looked at Hardys . The ratios are a bit different. Hubby takes 12 a day which is 3x the serving size on the label which is what they use in clinical trials do it’s a lot more than the Thorne one.
Yours has much more thiamin.
You could try Hardys . It does have other trace elements in it too. A serving size of that is 4 capsules so it gives you the ability to reduce the amount by taking less capsules.
It also has ALA, lithium orotate, acetyl-l-carnitine,grape seed, NAC, ginkgo etc in the proprietary blend.
I would try a low dose of sinemet. If it helps you then you confirm PD. If not, then you may not have PD. Note some people w PD are not helped by sinemet but based on my journey more than not are at least to some degree. So I don't see a down side to trying a low dose to help diagnose what is going on.For me I immediately felt an impact.
Mucuna Pruriens is just another form of Levodopa. It's just like Sinemet except for the Carbidopa component which helps more of the Levodopa from Mucuna reach the brain through the brain barrier. There is way more confusion than there needs to be because not every doctor is aware of the rampant supply of Levodopa in the form of Mucuna Pruriens that is accessible to the general public.
From what you have described, you are already responding to Levodopa (aka Sinemet w/o the Carbidopa). I don't know how much Mucuna you are taking and this is important because if you abruptly stop it, you will have the same adverse reactions as you would if you trialed and stopped Sinemet as well. So, if you are responding to Mucuna, no need for alarm. You just accelerated the treatment plan for Parkinson's which is indeed Levodopa / Sinemet / Madopar etc. 🙂. A Sinemet trial at this point would be moot.
I would suggest that you will get an appointment with a Movement Disorders Specialist (MDS) who will be able to prescribe the right dosage of Sinemet for you and hopefully most of your symptoms are better controlled after that. Depending on what other symptoms you are experiencing, there might be other medications that can be prescribed for you. Hope this is helpful.
Thanks so much! This is excellent advice and I agree. I will follow up with the movement disorder specialist. I'm going to add green tea extract to the mucana for now and seeing that helps.
Hi. I have been where you are for the past 31 years. I was only diagnosed with PD in 1992 and took the meds as peescribed but they did nothing so don't waste your money. Since 1997 I have lived a normal life because I joined Rsun/Walk for LIFE in 1994 and by `997 all my movement symptoms had dosappeared. Others with PD have also don ethe walking but did nort understandd that they had to walk as FAST AS THEY POSSIBLY COULD. They just walked and it did not work.
When you walk as mfast as you can, as if you were running away from a fire, then your brain produces a substance called GDNF (Glial Derived Neurotrophic factor) which repaires the damaged brain cells. Glial cells are brain cells and neurotrophic means nerve repair.
Running is natural, at any speed, so it does not produce GDNF!
I have read your book. I am fast walking and more than anything I want to be well. I also want to have a quality life and when I don't see results it's so hard to be patient and wait!I'll keep doing it and I won't quit.
I take mannitol in my morning tea, one teaspoon a day, and it appears to have helped my tremors. Also, I take S-Acetyl L-Glutathione each morning (1 capsule of the Doublewood brand), along with mucana. My tremors are much better with these additions.
I did change my b complex and I'm no longer having peripheral neuropathy. I looked into Janice Hadlocks books and the whole approach just was not right for me.
My tremors are about the same. I thought I might try mucuna/carbidopa combo. eventually. Im working with a DO who thinks Im long haul covid shot injured. I'm on a detox program. It may help, I hope.
I'll continue mmy pursuit until until I find what works best for me. It takes time.
Thank you for the reply. my tremors have progressed a little bit to the left side but like you, I’ll keep fighting until I find a solution. I’ve been using a nicotine patch. It seems to be helping a little bit.
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