Do the Neurologists and Movement disorder... - Cure Parkinson's

Cure Parkinson's

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Do the Neurologists and Movement disorder specialists add any value in managing your PD?

Farooqji profile image

They only know about the symptoms and don't know the root cause and the remedy. They can only confirm that an individual has PD and that's it. They only put you on some of the listed drugs and then experiment with varying doses and combinations. If I was a neurologist , I would not exploit the PD patients as this profession has no clue of the disease so far. I prefer to consult physical therapists instead because I can experiment with C/L myself.

65 Replies

How do you get CL prescriptions without the medical profession?

Farooqji profile image
Farooqji in reply to Joynb

I take Mucuna

Grumpy77 profile image
Grumpy77 in reply to Farooqji

How effective is mucuna? What symptoms does it help reduce? Are there any side effects? What is mucuna classified as- drug, supplement or food?

I'm with you on your post. The neuros are only interested in dumping meds on pwp and then use your response data for research to progress their own profession. There's nothing like patient first

My neuro and GP never enquired or investigated root cause or did blood tests so as to advise on lifestyle changes. All they hammer on day in day out is MAKE SURE YOU TAKE YOUR MEDS

Th only lifestyle change they advised me on was exercise. Good but not close to being enough

Err.... don't forget my questions in the first paragraph

Thanks

Farooqji profile image
Farooqji in reply to Grumpy77

Mucuna is more effective than C/L with fewer side effects

ncbi.nlm.nih.gov/pmc/articl...

It is classified as supplement and available over the counter.

I use either NOW Dopa mucuna 15 % extract capsules or take raw beans and make powder of it. Raw powder has also additional ingredients which are synergetic with Ldopa (which is 4 to 5 % in raw powder )

Farooqji profile image
Farooqji in reply to Grumpy77

Mucuna is more effective than C/L with fewer side effects

ncbi.nlm.nih.gov/pmc/articl...

It is classified as supplement and available over the counter.

I use either NOW Dopa mucuna 15 % extract capsules or take raw beans and make powder of it. Raw powder has also additional ingredients which are synergetic with Ldopa (which is 4 to 5 % in raw powder )

jimo2017 profile image
jimo2017 in reply to Grumpy77

to true grumpy my neuro sent me for dat scan may 3rd still not had results

Boyce3600 profile image
Boyce3600 in reply to Farooqji

Can u elaborate on your experience with it...where purchased, how it affects you, duration of improvement, how long you have been on it, comparison to C/L.. thats a lot of questions, right?

I SECOND YOUR comment 150% about the neurologists I have actually quit the one I'm taking my husband to. I'm tired of going and being the only person she talks to. She does not even want to see him walk. There is absolutely no help. I'm using doctor C in Italy and my primary care physician and a nurse. I'm not sure where we're going but it's a lot better than where we've been with the neurologist.

Farooqji profile image
Farooqji in reply to Boyce3600

If you can't find raw beans, you can find its extract in different strengths with different supplements providers. I use NOW Dopa Mucuna and DIY powder. it is more effective than the sinemet according to different trials. You can also use Zandopa which is flavored powder of Mucuna

Boyce3600 profile image
Boyce3600 in reply to Farooqji

Thank you! What do u find different in its effectiveness from C/L?

Despe profile image
Despe in reply to Farooqji

How much of Zandopa powder for someone to start with just intermittent tremors? Thank you!!

Farooqji profile image
Farooqji in reply to Despe

6 grams 2 or 3 times

Despe profile image
Despe in reply to Farooqji

Thank you!

bibsie profile image
bibsie in reply to Farooqji

When do you take mucuna? How is it absorbed? Must you worry about protein blocking its absorption? What kind of dose to start with? (My husband has tremors butt has not taken any meds thus far...but the tremors are getting worse.)

Farooqji profile image
Farooqji in reply to bibsie

Put him on low dose zandopa (5 grams twice a day ) Increase the dose incrementally if low dose doesn't work. Find the most effective dose by hit and trial

Erniediaz1018 profile image
Erniediaz1018 in reply to bibsie

Yes you should take it at least an hour before meals. Proteins interfere with absorption.

Agreed! The 2 neurologists that I saw both made me feel like there was no hope. I may have a fool for a patient, but I became my own doctor and I have been improving ever since.

I agree with you completely. Most of them (I have visited) was forcing to me have : Syndopa Plus (Levodopa, Carbidopa) even though they were only making my conditions worse. I have stopped all meds following our own regime with supplements, in last 10 days i have seen great changes which i was not getting with any of the doctor prescriptions. Not sure if it will be a long lasting effort, but i am hopeful (refer my profile for my current food / med regime)

RoyProp profile image
RoyProp in reply to TeenaIyer

referring to your profile for current food / med regime

Unfortunately, I must agree with you. I just got dismissed as a patient by my "Parkinson's specialist" for not following his orders to the letter. It was only my second visit with him but his aid was supposed to accurately relay issues and adjustments between us. This guy has clever business model but it's more for his health than mine. It felt good to leave his office.

The only neuros I would trust are NWPs : neuros with Parkinson's.

Momzworld profile image
Momzworld in reply to Xenos

I've expressed this same sentiment more than once! I don't know what their problem is, and I hate to say iit but male neurologists are the lease patient friendly in my experience. I had two female doctors who listened and helped me decide which drug regimens would work. I loved them both. I don't have either of them now, but I do have a Nurse Practitioner this last visit that I really like. Neurologists really do need to LISTEN to their patients. We're all different while also having similarities from which they can learn.

sorry your experience with doctors was not fruitful. My husband's MDS is fantastic and is involved with PD research including cause of it and does not just prescribe meds.

Not all docs are created equal.

Farooqji profile image
Farooqji in reply to wifeofparky

What medicines and strategies has he advised so far and what is outcome

wifeofparky profile image
wifeofparky in reply to Farooqji

exercise is important, like walking and boxing.

He did a full neuro exam at each visit, every 4-6 months. Spent a lot of time talking with my husband to get a full understanding of his issues. When he was hospitalized, he personally called me at home with advice since he did not have privileges at the hospital where hubby was.

I facilitate a Caregivers Support Group currently and several of my members' loved ones see him. All med protocols are tailored to the individual.

My husband, who has since died from an accident, was seeing a general neurologist who was less than helpful and simply ordered Sinemet and send us on our way.

After going to him for a second opinion, he prescribed Sinemet in a different dosage, added Zoloft and selegiline. My husband was a totally different person. He was able to move more easily and his cognition and mood improved dramatically. At the time of his accident, my husband was fully mobile and independent. The only thing he did give up was driving because of his depth perception and slower reflexes.

I have seen several neurologists because of my participation in research and just in the course of the disease. Of the nine I've seen, three were excellent, three were fine, and three were not at all helpful.

There's one clear benefit I get from my M.D.S. it's not pharmacological since I stopped taking the Sinemet he provided. He scores me on the U.P.D.R.S. test so I have a measure of my progression, if any. It's not that I don't know how I'm doing, but this is more precise and objective.

That’s what they do...experiment with us...

We found he was only there to diagnose and prescribe sinamet. Too busy with so many cases, he will see us in 18 months. Here have a pile of brochures. You will be on drugs for the rest of your life I am afraid. And we had to wait 3 months to hear that!

It is foolhardy to try to manage your PD without some medical support. Doctors ought to be valued members of our support team. They can't do a lot but what they can do (prescribe and advise on meds) can't be done by anyone else! Some are better than others - but that is life. There is an obvious problem with their prescriptions - the dosage is "guess and correct" but 6 month appts is a long time to wait for the correction. Hence all the dosage discussion on this site and a lot of frustration with uncontrolled symptoms. It may improve with apps.

re Mucuna; they can't prescribe it so usually won't advise on it. You must however tell them you are taking it as it will screw up their dosage of meds. Nutrition and supplements: not in their training so again don't waste your time or theirs. But keep them informed.

I agree :(

Iqbaliqbal - You have hit a nerve, so to speak. Very much agree. My husband has been seeing a "movement disorders specialist" for 6 years. For the first 2 she was OK and seemed to be open to "alternatives" such as mucuna (she actually knew of the research) and marijuana (having patients who had used to good effect). However, at my husband's appointment about a month ago she told him that if he didn't follow her prescription protocol that he needed to find another doctor. She told him NOT to use mucuna, that she wouldn't work with any functional medicine doctor on Dave's case, didn't believe in the UPDRS, and that he could take his meds with a meal. This is the same neurologist who, from 2013-2016, received $68,000 from drug/med device companies. Thank you to the person on this forum who posted a link to the website where you can check these things.

Needless to say, we are looking for another neurologist. And, yes you can get C/L without a prescription as we did it recently. It is not the "branded" sinemet but you can get it in various strengths. The package came from India - we have not used it yet as we only bought as a backup.

wifeofparky profile image
wifeofparky in reply to kgold

God luck with the C/L you got from India. Is it from a reputable pharmacy or manufacturer? Be careful of any meds purchased online as you may not get what you are paying for. Also heat and other conditions during shipped can effect potency of any medication.

kgold profile image
kgold in reply to wifeofparky

I purchased from an online pharmacy. I have a friend who buys her LDN from them and has had no problems. Technically, they want a script but will fill order without it. It came quickly. Having said that, I have some minor concern about it. We may or may not use it.

Cons10s profile image
Cons10s in reply to kgold

Kgold, Can you send me the pharmacy information. I’m going to have my Indian friend look further into it for me.

kgold profile image
kgold in reply to Cons10s

I will PM you later today.

I have had nothing but support and understanding from my neurologist at the National Hospital for Neurology and Neurosurgery, Queens Square, London. He is concerned with my overall health and I could not wish for better. My GP plays little part in managing my PD beyond repeat prescribing. I am happy with my PD meds and do not take Mucuna to replace levodopa. In much the same way, I would not take willow bark instead of aspirin.

Farooqji profile image
Farooqji in reply to

Good to know that your PD is better managed and understood by your Neuro. Keep in touch with him

It depends on whether you wish to deal with a health professional or a health amateur

i CAN'T GET THE REPLIES

I kind of agree about Neurologists and they are expensive and sometimes they’re guessing. I have found great information and feedback from members of this group and the Nurses at Parkinson’s UK helpline.

Thanks to all,

Paul

in reply to october61

U.K. neurologists are free.

october61 profile image
october61 in reply to

That’s great if a guy is living in the U.K.

in reply to october61

One of the advantages of the NHS - along with free meds from diagnosis as I also have Diabetes and am exempt from all prescription charges. We can also choose to go to the NHS Hospital of our choice for our treatment.

october61 profile image
october61 in reply to

Dear Osidge, thank you.

alaynedellow profile image
alaynedellow in reply to

Parkinsons meds are not exempt from payment on the UK. Your diabetes exemption covers the cost because in UK it is an all inclusive exemption.

in reply to alaynedellow

That is what I said!!!!

Sadly I have to agree with you. When I was diagnosed I was told to look PD up on the web to find out what it was. I was told to take meds immediately - I only had a stiff hand. My next neuro never examined me and on both visits never asked if walking better etc just said how do you feel, when said I taking Mannitol he said never heard of it with PWP and i should dollow his advive and take siminet and return in year. Complete waste of space he is. I paid to see a private Neuro and he confirmed PD explained lots to me and was very kind- sadly he moved abroad.

I now take advice from you very well informed fellow sufferers and feel I'm doing ok.

My experience of Neuro's has been a waste of a car journey and a parking ticket to be honest.

On the other hand Dr Constantini is wonderful.

Best wishes to eveeryone on this journey

in reply to alaynedellow

I guess all our experiences will be different. My treatment is at a hospital were a huge amount of research takes place and my Neuro is the Deputy Director of research. He considers the whole person and looks at issues such as the depression and mood problems that often accompany long-term health problems. It was through him that I was was referred to a sleep clinic and had my sleep apnoea diagnosed. He also referred my to a colleague neurosurgeon when I had c6c7 radiculopathy.

Iqbaliqbal

You write that neuros do not know the root cause or the remedy for PD and that is probably true, but how is that a fault. I dont believe anyone does know the root cause, nor that anyone has the remedy. Do you?

Mucuna only treats symptoms so why do people take it if it does nothing to stop the disease.

I would wonder why consult physical therapists, they dont know the cause either and we can do exercises ourselves without them.

GymBag profile image
GymBag in reply to Hikoi

Poor Neuros ,how would you like to spend 4 years in University and then god knows how many more in Med school and specializing and then set up a practice and then after all that school and money spent , all that you can do is prescribe a very limited number of medications and a bit of exercise and you have to follow the mandatory guide lines of the medical association and then watch your patients deteriorate. Must be awful. I would be bored to death. I visit mine over a visual telecomunication network at my local hospital while he is at his home office in the big city. I can get to the hospital talk to the telecomuication nurse, go online, get him upset and be back outside in the sunshine in 30 minutes . He keeps my presriptions up to date and it does not cost me for a visit here in Canada so .......

Farooqji profile image
Farooqji in reply to Hikoi

Mucuna is a natural substance which also treat the symptoms but have fewer side effects and more effective. Physical therapists do not know the root cause either, but they know the science of muscles and nerves which are weakened by PD

in reply to Farooqji

And neurologists do not know the science of muscles and nerves? I do not know where you get that from. Have you looked at the training pathway for a neurologist?

Cagey84 profile image
Cagey84 in reply to Farooqji

The levodopa in Mucuna is EXACTLY the same as in Sinemet etc. Open question - where is the objective evidence that Mucuna has fewer side effects and is more effective than pure levodopa?

danfitz profile image
danfitz in reply to Cagey84

While it’s true that levodopa is levodopa is levodopa it is possible that mucuna contains additional compounds that act synergistically or potentiate levodopa.

Juliegrace profile image
Juliegrace in reply to danfitz

While this may be true of whole mucuna powder, I think the 98-100% pure l-dopa derived from MP offers no additional benefits other than the lack of carbidopa. And for anyone reading this who thinks MP does not cause dyskinesia, I can attest that it does at low dose 98% pure and also at 20% l-dopa content.

Farooqji profile image
Farooqji in reply to Juliegrace

True, however I take raw powder for the last one year without any such effects

Juliegrace profile image
Juliegrace in reply to Farooqji

Did you have dyskinesia before on pharmaceutical levodopa?

Farooqji profile image
Farooqji in reply to Juliegrace

I have never used pharmaceutical Levodopa

AmyLindy profile image
AmyLindy in reply to Juliegrace

Per chance is there a good , objective “MP topic thread” on HU (as there is for high dose Thiamine HCL followers)?

AmyLindy profile image
AmyLindy in reply to Juliegrace

MP / dyskinesia “2017 study -revisited” insights.ovid.com/crossref?...

Juliegrace profile image
Juliegrace in reply to AmyLindy

The paper that came up did not mention MP.

Cagey84 profile image
Cagey84 in reply to danfitz

Of course it's possible, but is there any evidence? It's also possible that MP contains additional compounds that are unsafe or deleterious in long term use. We don't know.

Farooqji profile image
Farooqji in reply to Cagey84

Active principles and pharmacology Seeds contain L-DOPA (yield 1.5 %) and some other aminoacids, glutathione, lecithin, gallic acid and beta-sitosterol. Mucunine, mucunadine, prurienine, prurieninine (unidentified bases) were reported from seeds. Serotonin was present only in pods. Other bases isolated from the pods, seeds, leaves and roots include indole-j-alkylarnines-N, N dimethyltryptamine; its N-oxide, bufotenine and s-methoxy-N, N-dimethyltryptamine. Leaves gave6-methoxyharman also.

Farooqji profile image
Farooqji in reply to Cagey84

ncbi.nlm.nih.gov/pubmed/286...

Cagey84 profile image
Cagey84 in reply to Farooqji

Thanks for sending the link, Iqbal, very interesting. I also found this which you may like - scienceofparkinsons.com/201... .

Regarding the paper:

1. It's a small study, fairly acknowledged by the authors.

2. The MP doses used are way above the standard LD comparators (up to 5x). The high dose LD alone performs the same as the MP. As the authors say: "Are these encouraging clinical effects of MP related to some intrinsic properties that are independent of levodopa, or merely due to the intake of levodopa alone? The latter hypothesis is the most probable,"

3. The higher adverse events with LD are almost all due to somnolence. It would seem highly unusual for so many AEs of just one type in just 2 comparators. Difficult to explain, but equally difficult to extrapolate to a conclusion of better tolerability.

I totally buy the argument that MP is useful in countries where pharmaceutical preparations of LD aren't available. However, where it is prescribed, I for one would strongly advocate using it, then you know exactly what you're taking.

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