Parkinson's Movement
13,543 members12,075 posts

No PD Symptoms but still have PD

Just back from my neurologist visit.

He confirmed that I have no Bradykinesia , no stiffness or rigidity,no tremors. I also added that I have no swallowing problems , no sleep issues , no bowel movement issue , no mood problems, a good sense of smell ,only some dystonia when walk fast which considerably reduced for the past month.

BUT Still I Have PD.

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are you taking any medications?

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Magnesium

B1

Vitamin D3

Omega3

Omega6

Mannitol

B12

Folate

Low dose B6

6.25/25 Sinemet twice a day trying to switch to Mucuna P

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Wow the that's great. Tell me your eating habits please.

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Thank you.Low carbs. Limited gluten.

High fiber . Walnuts, chia seeds , almonds. Less animal protein except salmon. More plant based proteins.

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If you take Sinemet then sure you may not have symptoms. See if you do not have symptoms without medication.

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hi, thanks for sharing your experience. apologise in advance if I am repeating a question you have been asked in the past; i searched the web for Mannitol and what is it for but i can't really understand what is it for ? can you please comment or point me to a link where u have answered this question. thanks

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Xabojuro2

Mannitol and Parkinson's Disease.

outthinkingparkinsons.com/a...

scienceofparkinsons.com/201...

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Good work on keeping PD at bay. How is it going trying to switch to Mucuna P? We've got my husband up to 50% on Mucuna P, but he's wanting to hang on to his reduced Sinemet RX even though the carbidopa med gives him nausea. Thanks for a ll you information.

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When consulted with Dr Costantini about Mucuna P , he didnot advise Mucuna P ,so I kept continue taking the low dose Sinemet instead.

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Did you previously have any significant tremor? Do you exercise and how much? How long have you been taking b1 and mannitol? Was your improvement gradual? Could you share dosage of your list? Thanks for sharing, your posts are most hdlpful.

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I had tremors in left side and neck but it all subsided.I do indoor cycling 3-4 times a week with NON PD people at gym . Walking 20 minuets ever other day.The improvements from Thiamine started from 2nd week and reached its pick in 4 months then stayed steady.

Thiamine 1.5grs morning 1.5 grs noon

Magnesium (Aximagnesio)300mg morning 400 mg magnesium citrate at bedtime

B12 400mcg (Methylcobalamin) daily

Folate 400mcg daily

D3 1200 IU daily

Mannitol 5grs twice a day

Omega 3 and 6 as part of Vit D capsules

B6 2mg which comes with Aximagnesio

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Thank you. "The improvements from Thiamine started from 2nd week and reached its pick in 4 months then stayed steady."

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Hi Roy

I'm on Mucuna and NAC and mannitol which is the greatest improvement

Thought I'd throw in thiamine

Can you tell me what kind and dosage?

I am tremor dominant as well

Thank you

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See my profile and posts and replies

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Thanks

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Do you think mannitol helps??

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Mannitol helps alot for non motor symptoms like better mind clarity,sense of smell,..

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Did it take a long time to work? The silly thing is I have a bag of it in the cupboard and then never get around to giving it to andy. Just nervous of the dosage I guess. Any suggestions? He’s 85 Kgs.

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I take 5gr twice a day with a cup of tea in morning and evening . I started 2 months ago and I think started working quite soon.

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Kia17, what make of thiamine do you take? Mine comes as 100mg capsules which would mean taking 30 a day to take the dosage which works for you!

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Thiamine hcl from Solgar. The tablet strength : 500 mg

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Thank you. However although I can find "thiamine 500 mg" by solgar, I can't find "thiamine hcl". How important is the 'hcl'?!

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Solgar 500 mg version is Thiamine HCL as far as I know. Its crucially important based on my personal experience.

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I asked the same question from Royprop and he made me aware of you look in the back of jar for 500mg solgar it says hcl so yes kia17 is right 500mg solgar is thiamine hcl

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Apparently your regimen is giving you very good control. Be grateful. I wish you continued success. I compare this to someone with high blood pressure. Just because your meds are keeping your pressure in the normal range doesn't mean you do not have high blood pressure any more. The dosing you are on is perfect for your PD right now.

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Thank you for these

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That is great to hear and gives us hope that the same can happen for us. I emailed Dr. Constanti last week but still have not heard back from his nurse.

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Usually takes around a week. I just received my reply from him.

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Thanks. Good to know.

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Rejoice.

John

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I confirm that I have a positive DatScan

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Me too. I was in denial for about two years wouldn't accept the diagnosis until I got dat scan 😶

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When were u diagnosed?

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Had dystonia from 2015 and other symptoms even years before but diagnosed on March 2017

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Consider your self lucky, you can still function. ENJOY IT.The symptoms will come no doubt about that, If you think you have been misdiagnosed get a second opinion it will help you to understand.Maybe you are to yang and the symptoms are very mild, barley noticeable. Just enjoy he time you have , the misery will come much to soon. I Might misspell the[ BARLEY], Just replace the word with[ little] and you will get my meaning. Thank you for understanding. Good luck.

Maja

The name is pronounced phonetically with J not like G. Just like to make clear . thanks

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How long have you taken mannitol and do you think the biggest improvement is from the thiamine? Were you taking everything else as well as exercise with little or no improvement before thiamine? Did you have stiffness? Sorry for so many questions but so many of us are desperate to improve. Thanks in advance for any info

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Donot worry,feel free to ask your questions.

Started Mannitol 2 months ago.

Mannitol helped for sense of smell but B1 improved both motor and non motor symptoms. I believe the great improvements is from Thiamine.Apart from B1 and magnesium that started almost a year ago other supplements was from 2 months ago almost when started Mannitol.I had pain and stiffness untill few months ago.

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Thank you, so happy for you!😊

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"The symptoms will come no doubt about that"

Your comment is dead wrong and totally inappropriate. Dr. Costantini has brought over 150 patients into continuing remission with high dose thiamine and there is every reason to expect that to continue. Please educate yourself before pronouncing such curses.

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151 counting me, "patients into continuing remission with high dose thiamine". Still waiting for tremor to subside. This may yet occur with continued use of hi-dose thiamin hcl

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Thank you for sharing your journey. It’s helping me get the courage to try n convince my bro to go this way. God bless.

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If after 4 months he sees improvement, he has the remainder of his life to be thankful. The alternative is Parkinson's

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Same here

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Yes, I agree !!

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Would you please elaborate on Dr. Costantini and high dose thiamine?

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Please search the forum. There are loads of posts and comments about it.

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Well said, park_bear.

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Thank you park_bear 🙏 you too Royprop thank you both

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Good outlook to share

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Thank you Maja

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Wow that’s fantastic Kia. I’m so happy for you. Hopefully yours is slow progression. Go Kia!!!

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Thank you for this. Likewise wishing the same for your husband.

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Thank you for posting Kia17. I am going to start my bro on all of what you’re taking. I’m hoping to convince him to cut bk on the C/L med n the others but I know he is scared. He gets the DAT Scan tomorrow. We’ll make an appointment to see his neurologist after that. She is young n hopefully open to researching Dr C n his work. I have not written to him yet, but I plan to. You have been a tremendous source of hope to me. Thank you so much. God bless you.

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Thanks Kia17! I’m very happy for you! You give some of us hope that there may be a way to help ourselves! Anybody that can find a way to have relief of the curse of PD symptoms, whether it be prescribed medicine, exercise, or whatever, I’m happy for them!

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Thanks very much. Keep it up.

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How long did you have PD? What medication you took before,?

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Please read this post for a complete information.

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So happy for you, Kia. Congrats.

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Thank you

All the best

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Great to hear your good news. Can I ask if you started the high dose B1 straight away or did you build up gradually? Also do you have a contact email for Dr Constantine? Finally where do you get mannitol from? Thank you. You give us all hope.

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carapetata@libero.it

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I get Mannitol from Amazon.

I started Thiamine with 4grs a day then reduced to 3grs a day divided dose.

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Your fast reply is really appreciated. Thanks.

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What I undrestand from PD is that it takes years for the disease to develop and progress. When we try to reverse the symptoms , it won’t happen overnight , because it hasnot developed overnight.

We really need patience and determination.

IMHO:

Don’t underestimate the power of forced exercise like cycling and fast walk.

Do more social activities.

Spend less on your mobile and social media ,internet in general.

Do charitable activities if you have spare time

Visit your freinds regularly.

Best wishes

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Don’t underestimate the power of forced exercise like cycling and fast walk.

Do more social activities.

Spend less on your mobile and social media ,internet in general.

Do charitable activities if you have spare time

Visit your freinds regularly.

Brilliant advice, Kia17.

Quit thinking about it and as one aged NPR announcer stated while I was listening to a pledge drive in the 90’s stated: ‘Get up off your good intentions and -...

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When you say it comes with, does it mean that your b6 comes together with your magnesium and you just take 1 tablet? Similarly with omega 3 & 6 , does it come with your fit D? My dr recommended q10 and azilect. Nothing else. Movements are slow and used to play 10 sports.

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Yes correct. B6 comes together with Magnesium. Likewise Omega3 and 6 come together with Vit D

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Can you tell me the make for these supplements

Folate

Magnesium

D3

Magnesium citrate

Its not easy to obtain these supplements in Asia especially thiamine so i will have to buy overseas.Do you mean that b6 comes with the d3

Thanks

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Sorry i mean omega 3 & 6 comes with D3

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Yes.

B12 and Folate are in one capsule

Magnesium and B6 are in one tablet.

D3 and onega3-6 in one capsule

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D3 + Omega3 and 6 ; Igennus

Magnesium + B6 :Pegaso ( Aximagnesio)

B12 and folate; LifeExtension

Magnesium citrate: Solgar

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I herb do have the solgar but apparantly you have to pay a tax when it is delivered

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With the custom chargrs it becomes something around £16 for 100 tablets .

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Is this purchased in the uk? I searched and see you buy vita cost>?Does the thiamine cost in 150mg or is it 500mg?

Does Holland and Barrett sell them?Aslo what does mannitol do? Doctors don’t seem to orescribed them here.

Thanks.Im trying buy them in Australia.

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Hi Kia 17, what is Aximagnesio? Can you tell me the ingredients so I can look for a U.S. version?

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I started Solgar Thiamine HCL on 3.24.18. I did a blood test a day before for B1 and D. B1 came ok 28 [7-42] but D was low -62 [75-225].

After a week a saw improvement; also I noticed the improvement is much better if I take B1 on empty stomach but I get gases and feel bloated. So I'm taking one hour after food but no later than 3 pm.

I'm taking 2 g / day of B1 and 2000IU of D3, nothing else and after 3 weeks I can feel big improvement in physical and mental strength. Also the tremor intensity got down around 50%.

I wrote dr. Constantini and after a week he replied back and told me to stay on this dose for now. He asked me to send him a pull test video and the tremor video.

To be sincere I was reluctant to do this test with B1 but it seems to be working.

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I wrote dr. Constantini first time three weeks ago and he replied after a week. Monday I wrote him again and he replied today.

I told him about onion being the best sleep and anti-anxiety medicine for me. I told this to some doctors in US and they started to laugh.

Similar I can say I had in the past a skin fungus infection I could not get rid of it no matter what medicine I used. I told a dr. about Castellani's red paint used in middle age and he just laughed. I bought some from Canada (in US they do not make it) and that helped me cure it.

Here is what he said:

"Dear Ion, the only thiamine is enough for the therapy. We usually add the other vitamins group B when we don't obtain the desidered result. By the way, i think it could be helpful in your case to take a dose of all the other vitamins group b, folic acid also, equivalent to the daily RDA. We give thiamine on empty stomach, in the morning and at lunch time.

I'll try onion very soon myself! I have never experienced it with my patients but on the net, in Italian too, we can find a lot of reports about the relation between onion and sleep!

Remember that the right dose stops completely the disease progression, so you have to take a short videotape of all your motor activities so that you can have a reference for the future: you can send that video to us if you agree.

Kind regards,

Antonio"

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Please post Dr C's contact info

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Hi Ion_Ion >>> do you take 2000 or 20000 IU of D3 ??

There's now a lot to do about a Brazilian Doktor (Coimbra, I think) who does a protocol that helps a lot with MS (and some cases (but the last year not many articles) of Parkinson),,,

based on hyperdosis Vit. D

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2000. I take supra-dose of Thiamine 2g/day. Last year I took D supra-dose of 50 000 / week for 8 weeks as my D level was 42.

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Just to be sure : 50000 a week = about 7142 IU a day....???, why such a strange doses (and not for instance 5000 or 10000 a day).

And you did that for 8 weeks ?

Can you say your improvements in Motorik symptoms were due to Thiamine or Vit. D ,,,,or can't you say it exactly which of the two....

Did you take it under medical control (regularly bloodcontrol >>> parathormone // Ca levels // to check the kidneys....because Dr. Coimbra gives amounts of > 20000 IU Vit. D a day.

(with 90% successrate by MS ....!?!😳😳)

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That's called a shock dose for people with low D (I had 42). After 8 weeks the dr. put me on 1000ui/day. After one year I did another D test and I was still low (62) so I went to 2000ui/day. I do not take D for PD, I take it because I'm low on it.

For PD I started Thiamine on 3.24.18 2g/a day and after a week I noticed improvements in my energy levels.

And by the way , last year, when I took D shock dose I noticed my PD symptoms went down including the tremor. The thiamine helps with tremor but only partially. Instead thiamine helped with energy killing the anxiety and depression and giving a clear thinking so I can do my programming job.

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Very interesting, where do you living.? Do the doktors or neurologist know that "the shock dose" in your country or was you it been giving through your complementary (holistic) therapist ??

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Ja, and another thing ; is it "bad" to take Thiamine in the evening ? (because sometimes, I don't manage to take it at noon (to much stress und to much watching colleagues,....)

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The family doctor gave the dose and that was before I was diagnosed with PD. I live in Michigan. The Thiamine should be taken no later than 3pm as it may cause insomnia. It also helps with the stress. Why taking vitamins in front of the colleagues would be a stressful thing?

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Interesting my hubby has just been given 50,000 IU a week of Vit D for a year. Then recheck. We are in USA

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For a year!? I took it for 8 weeks.

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did you gradually work up to 2g B1 dose?

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No. Just started 1g morning 1g around 2-3 pm.

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Thank you for your reply, I’m so what confused.You said you take 1.5g of thiamine and vitacost is recommended for easy swallowing..does it mean you take 3 tablets as they come in 500 mg. what is folate for? My husband does not take sinnemet but takes azimet which is extremely expensive over 100pds for 30 tablets. Its apparently good although i do not see the effect as such. Also mannitol, what does it do?

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Thank you.You definitely give us hope.On these medications can you tell me if you got these from Dr Constantine? I see his name being mentioned .Is he an online neurologist who is helping people?

My husband is youngish but have seemed to be growing old at a very fast speed.

Any tip for getting rid of the masking face?

can i have Dr Constantine's email?

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Dr Costantini has only advised me of Thiamine Hcl and Magnesium.

Please send me a message I will forward you his email address.

Which country are you in?

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Dr Costantini can be reached how? Will he answer just anyone or do u start with videos, medical records proof, etc?

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Thank you very much for this very important information. I did search Sinemet 6.25/25, but did not see anything about. Is it something special? Thank you.

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Hi Natalia

I take half a tablet of 12.5/50 twice a day. The tablet should have score.

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lastly i tried searching from amazon and couuld not find these drugs.

Can they be found in any drug stores in america?

assuming you come from the states...

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Special order from Sierra Blanca Pharmacy, Ruidoso, New Mexico and yes in the states

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Glad to know you are so well and hope you get better in the most natural way!

Please can you tell me where you get your drugs eg in the states , uk or....

I tried amazon us chemist australia and i cant seem to find them with your dosage.

Thansk

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actually my husbands left arm is leg is very stiff.Will magnesium and thiamine help?

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I asked for Dr Constantine's email. How do i message you in this url?

I live in Asia. Thanks

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I messaged you his email address.please check your chat history.

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I've noticed that many take Thiamine with magnesium. What's the purpose of taking magnesium with Thiamine if a deficiency/insufficency does not exist? Is it relvant to Dr Costantini thiamine treatment? Does Dr Costantini recommend taking magnesium with Thiamine?

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He advised me to take magnesium with the Thiamine saying that Mg would increase the Thiamine effects. But everyone is different and he may or may not advise other PwPD to take Magnesium with Thiamine.

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I started switching Sinemet to Mucuna P from today afternoon. I normally take 6.25/25 Sinemet in the morning and 6.25/25 in the afternoon. I have replaced the afternoon dose with 1 Mucuna P capsule of 60mg L-Dopa.

I feel almost the same as Sinemet and plan to replace the Sinemet morning dose with Mucuna P in few days time.

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