PARKINSONS, RLS, ALS, MS INFORMATION, HELP

[SuperMNew]

This information may save my life (and yours). I don't know, but we're all searching here. See what you think: youtube.com/watch?v=6d-yiLi...(Not working as expected?)

[SuperMNew]

I tested the link and it does not seem to be live. So, do this: Search on YouTube for this title: ALS MS Parkinsons-Dr. Peter Glidden RLS and Parkinson's are both neurological problems (at least for me it is), so this information was a God-send to me. Search, my friends, for answers. That's what I do constantly.

[Hidden in reply to SuperMNew]

Very entertaining!

[Hidden in reply to SuperMNew]

So what was the answer which would save your life and ours. Can you give a answer so we don't have to look on YouTube ?

[SuperMNew in reply to Hidden]

Elisse, thanks for your sane response to my post. And this is for all the others who read this. You can stick to your drugs, but I have found that drugs FOR ME only increased my misery. Taking drugs only led to taking other stronger drugs that eventually led to others. I said to myself: there has to be a natural cure somewhere. I have NO financial interest in what this doctor is saying; but I have found his science more than credible. He has many years' experience helping people get well that simply does not happen with drugs. In just 2 weeks of trying his formula, I have seen progress that nothing else has given me. And my suffering and searching for answers have lasted 40 years! I would say to you and others, arm yourself with information. Do something to help yourself and listen to what he is saying. Look up other videos he has out there. Think about the wisdom your own body has built into itself for healing. If you give your body what it needs to function normally, it will function normally. At least that is my viewpoint.

[Hidden in reply to SuperMNew]

Unfortunately diets cant fix everything. I am glad you have found what works for you. The rest of us will keep taking the meds which for the most work for us. I dont think anyone else on here has found taking "drugs" has led to taking stronger drugs which in turn has led to even stronger drugs,. If that happen to you then thats not good. But your experience of taking them, is not everyone else's. Anyway i thought you had found your "cure" for your RLS 3 yrs ago, when you found that aluminium in your teeth fillings were your cure by removing all aluminium from your body.

[SuperMNew in reply to Hidden]

God bless you, Elisse. I hope you can find your way through your problems and something that works long term for you.

[Hidden in reply to SuperMNew]

I find it sad how nasty responses can be. I’m right there with you, find the core issue and look tirelessly for a natural cure. Please keep me posted, I appreciate your search.

[SuperMNew in reply to Hidden]

You are so welcome! All the time, money, anxiety, and sheer agony that I've spent KNOWING something is wrong in my body and trying to find out what exactly it is, has been exhausting. And watching my condition gradually get worse tells me I need to continue to search for answers. So I weigh: --give in to what insurance will pay for (drugs) and prolong the agony, or--continue searching for a cure. Drugs are a dead end, sometimes literally. So I search. Yes, some people can be down right nasty sometimes.

[Lapsedrunner in reply to SuperMNew]

If you’re talking about Elisse2 I don’t think she was being nasty

[SuperMNew in reply to Lapsedrunner]

I am not blaming or accusing anyone. Actually, I did not read all the dissenting comments. I steer clear of negativity, arguments and fighting. Those are always counterproductive (one of the signs of low dopamine levels in the brain which CAUSES RLS and Parkinsons, among other things.) My research has led me to the conclusion that my problem is Low Dopamine levels in the brain. I am now working to find ways and means to rebuild the synapses and production of normal dopamine levels and heal my brain. (Low Dopamine has nothing to do with inherent intelligence.) Do some research and you may find this to be a problem as well. Proper nutrition is a BIG part of healing; lack of proper MINERALS and vitamins is a biggie as well. God bless you as you search and educate yourself, Lapsedrunner.

[Lapsedrunner in reply to SuperMNew]

You and PreciousSleep were referring to nasty comments. Yes, it is long accepted that dopamine levels/ dopamine receptor dysfunction is a big factor in RLS, hence the use of dopamine agonist drugs.

[Hidden in reply to SuperMNew]

I believe we have enough dopamine but have faulty receptors so the dopamine doesnt get transported correctly. Parkinsons dont have enough dopamine.

[Hidden in reply to Lapsedrunner]

Thank you Lapsedrunner for your comment.

[Hidden in reply to Hidden]

Looks like this member has now gone from the forum after their comment, I dont quite know what they considered was a nasty response, no where have i made any nasty response , only given my opinion which we are allowed to do on this forum, We can disagree. But in fact i think my comments were really nice.

[nightdancer in reply to SuperMNew]

We are just saying, this will not work for everyone. But, good for you if it DOES.

[Joolsg]

The man is selling his supplements and saying we need to follow a specific diet.

He lost my interest when he said MS is not genetic or autoimmune. I have MS, my sister & cousin have MS & my aunt died of severe complications of MS. My sister & I took part in the Cambridge Gene study that isolated the genes that can cause MS.

My view is that the man is yet another "doctor" on the make. If he wants to help people with CNS illnesses, as a doctor, he should publish his diet plan and advise which "amino acids" etc should be taken for free. Even if he did that, I'm not convinced it would help the illnesses he talks about.

I do however believe that following certain diets and taking certain supplements can help certain people. The problem is finding which diets and supplements work for which people.

I personally have tried several very restrictive diets for extended periods of time to no avail, whereas others have found doing so has helped their condition.

I would advise caution.

[Hidden in reply to Joolsg]

I still found it entertaining, I wouldn't credit it with enough credibility to make a serious comment on it, but what a performance!

If it means anything, I thought it was the guy from Game of Thrones, Littlefinger.

[Joolsg in reply to Hidden]

He would have made a fortune in the old wild west. He's probably descended from a snake oil salesman. His hair was the wrong colour for Littlefinger but he certainly had the same aura.

[Lapsedrunner in reply to Joolsg]

Lost the will to live by 12 mins!

[nightdancer in reply to Joolsg]

I also advise LOTS of caution. Beware of people selling stuff, they only want your wallet's contents. I have seen dozens and dozens of these things over the years, and this is not for me at all. I do not pay people who say they can "cure us" when we know there is no cure.

[SuperMNew in reply to nightdancer]

This doctor receives NOTHING from the sale of these or any nutrients, but his extensive research and clinical practice has yielded pretty impressive results and speaks for itself. He gains nothing if you purchase nutritional products or not. Believe it or not, he simply wants to help people. As always, the choice to know is yours.

[SuperMNew in reply to Joolsg]

Sorry, Joolsg. He is NOT another doctor on the "make." He gains nothing from recommending anything for healing. In other words, he does not make $$ whether you purchase anything he recommends or not. If you research this man, you will find that your distasteful comments about him to be totally BS!! His accomplishments, research, and published findings puts many of us to shame! Good luck in your suffering.

[Joolsg in reply to SuperMNew]

You’re entitled to think my comments were distasteful in the same way that I’m entitled to find his comments about my MS distasteful. To say MS is not genetic or autoimmune contradicts thousands of expert doctors and scientists.

I did say that diet and supplements help some people- but NOT the majority.

I can understand our US visitors trying to find an alternative method of dealing with RLS because the cost of medications and health insurance is beyond their means.

Here in the UK we receive healthcare and medications free of charge ( except for a nominal £9 for each prescription ), although we do pay higher taxes.

I’m delighted you can control your RLS completely without any meds. I wish you continued success in following the diet and taking the supplements.

[SuperMNew in reply to Joolsg]

You are mixing me up with someone else. I have never responded to MS comments, nor would I deny their existence, importance, or whether they are genetic or not. I'm out of this discussion!

[Joolsg in reply to SuperMNew]

I’m not mixing you up with anyone. You posted a link to Dr Peter Glidden talking about ALS, Parkinson’s and MS. I assumed you had watched the video in full.

I actually watched it and then commented that Glidden had made me realise he was full of, to use your term, BS, when he said MS was not autoimmune or genetic. He is totally incorrect.

Just looked up the company Dr Glidden is promoting ( Yongevity) and there does appear to be some controversy over their advertising and claims etc

stealthsecrets.com/youngevi...

I would love to believe Dr Glidden is making these videos for purely altruistic reasons but as he makes his money from his naturopathic practice and ‘Youngevity’ the company making the vitamin ‘paks’ promoted in his video, I remain sceptical.

Interesting that he also made a video some years ago supporting claims that chemotherapy didn’t work for more than 97% of cancer patients.

So, I stand by my earlier comments about the video and Dr Glidden.

[Eryl]

A simplification of the problem. I'm a believer in the Wahl's Protocol. You can follow it from her book, or if your problems are relatively minor (eg RLS fibromyalgia, neuropathy etc), you can get the gist from her videos on youtube. (start with 'mind your mitocondria'). It's eliminated my rls.

The protocol is aimed at healing from MS, so there shouldn't be any need to go to the most extreme of the three levels of the diet. And after 18 months, my nerves have built up a resilience so that I can sometimes ignore the diet for (e.g. for a social event), without worrying about repercussions.

There nerve damage may be caused by something like heavy metal poisoning or a virus, but those occasions are unusual.

[LotteM in reply to Eryl]

Eryl, I am sure you didn’t mean it that way, but RLS is not “a relatively minor problem” for most people on this forum. It can be, and then focussing on diet, triggers, etc. may help. For the most of us on here, RLS is a major and life-altering problem and very, very hard to control and improve quality of life. That said, diet is definitely in the arsenal of things to try and often at least somewhat effective, even for those with severe RLS. Veganism, glutenfree and sugarfree hasn’t helped my RLS, though. Unfortunately.

[Eryl in reply to LotteM]

I mean in comparison with a life threatening problem like MS

The effectiveness of diets is following them rigorously, and s well as not missing the hidden sources of things which are not good for us, is not overlooking missing nutrients. I wouldn't expect veganism to help as some nutrients are in forms that the body can not use directly, and their metabolization may not be as effective as it might. I realised that I wasn't eating enough leafy green veg and found that one nutrient I hadn't taken seriously was iodine, which is required for the production of myelin. Wahls recommends eating seaweed, I now get mine from daily kelp tablets.

[Joolsg in reply to Eryl]

MS is NOT life threatening ERYL but RLS very much is! Read the posts and see the agony and torture people go through.

Do you even read the posts? Suicide is a very real concern - night after night of

sleeplessness on top of the horrible feelings drive many to think of suicide.

I can assure you MS is nothing compared to RLS and I have aggressive RRMS.

If there was a button to click to show disapproval, rather than "like" I would be pressing it!!!!!!!

[Joolsg in reply to Eryl]

Seriously ERyl enough! Now you are saying that the reason diets have not worked for certain people is because they are not following them correctly. I followed the Wahls Protocol and took iodine tablets and guess what? It did'nt work for me. I followed the ROger MacDougall diet for MS for 15 years and it didn't help my MS at all. Drugs however, stopped it progressing.

You are someone for whom following a specific diet has helped but just accept it WILL NOT HELP the vast majority.

You can see by my responses that you have made me angry ERyl, and I am pretty sure there will be others who feel the same way.

Just consider how your comment looks. RLS is not a minor problem.

[Hidden in reply to Eryl]

Hi Eryl, I get the notion that you have a particularly unique view of RLS and how to deal with the symptoms. That's fine, and it's great that you've found something for yourself that works.

I do think though that you have to be careful not to get too evangelical about it. Especially, from what you reveal, your own experience of RLS is mild.

Diet is an important aspect of health no doubt and there are beneficial foods and harmful, (if excessive) foods. But diet has its limits.

I also think you need to be careful of belittling people's experience. RLS may not be a physically life threatening condition in itself, but it can lead to life threatening psychological consequences and it can lead to secondary physical conditions e.g. the consequences of sleep deprivation.

I note you also belittle neuropathy and fibromyalgia. Again dismissing people's experience. I have had a physically life threatening condition, but my experience of that was less painful than my experience of neuropathy.

I can only urge you not to project your own experience onto others.

[Hidden in reply to Hidden]

Well said!

[nightdancer in reply to Eryl]

Severe sleep deprivation IS life threatening. Deep depression is life threatening, especially when it is a "side effect" of severe RLS. I and my people have done MANY suicide watches in the last 28 yrs. Diets are not the answer for many people. If they were I would push them in my groups. which I do NOT ever do. people have to find what works for THEM. But RLS surely is a threatening disease. This is the attitude of too many doctors, "Well at least it will not kill you". Sleep deprivation is directly linked to high blood pressure, heart disease, depression, zero quality of life, etc etc etc. I know several people who HAVE committed suicide. And, no diet helped them, some of them tried.

[SuperMNew in reply to nightdancer]

Dealing with my own RLS, it seems logical to me that my body is lacking something that it used to get long ago and no longer gets. Especially since the RL is growing worse. I know our food does not contain the nutrients it is supposed to. Farming has changed hugely since my grandfather's days. I DO know that drugs are not the answer to the problem. They simply manage the situation. The human body was not designed to thrive on any of the drugs that doctors prescribe to cover the problem. I am looking for a solution. I will keep looking. As always, the choice to research and read and educate yourself remains with you.

[nightdancer in reply to Eryl]

IF RLS were "relatively minor" I would not have been managing groups for 28 yrs on Yahoo, Facebook, etc. I have contact with over 20,000 people in groups, and that does not include this one. Suicide is NOT minor, and I have done several suicide watches for people who cannot get proper treatment for their RLS. Just sayin.......we get enough of the "Well at least it won't kill you" from friends, doctors, nurses, psychiatrists, and so on.

[Joolsg in reply to Eryl]

Eryl, I have MS and RLS. I can assure you RLS is NOT a minor problem. I have aggressive MS but I can assure you my RLS is by far the more serious, life threatening, life changing serious disease so please do not minimise people's suffering by calling it a "minor" problem. I've never met anyone on my MS forums who wants to end their lives because of MS. However, on this forum you will see countless posts where people feel they can no longer carry on with the suffering and misery caused by RLS. Many of us have seriously considered suicide as the only way out of the torture!

You clearly have mild RLS which would appear to have been resolved through diet. I followed the Wahls Protocol and it made absolutely no difference to my MS or my RLS.

Please consider how insulting your wording appears.

[Hidden in reply to Eryl]

Eryl, RLS is NOT a minor condition. Most of us on here have severe RLS, the kind that is torture to have, the kind that can lead to suicidal thoughts, the kind that takes your normal life away, the kind that takes your sleep away, the kind that has you pacing the floor at night or even in the day. The kind that any diet will not help for most of us.

[Jelbea in reply to Eryl]

May I say you are lucky to have the strength and energy to be so self-dedicated to following your protocol. I have severe RLS and have tried many things including diet tweaking. Your protocol undoubtedly works for you and that is great. However, it seems clear that you have no real idea of how one is affected by bad RLS. I do hope your “protocol” continues to give you satisfaction.

[Lapsedrunner]

Are you still also taking Mucuna pruriens?

[SuperMNew]

Yes, in order to sleep at night. Last night I cut my dose of Mucuna in half--that's how much better I am feeling. And my RL symptoms are diminishing. I don't expect folks to take my words as totally legit because they may think I have an ulterior motive in selling something. I do not. I simply feel the agony of others going through RL and have great compassion knowing what I've suffered thru years and years. The real remedy may be expensive, but I can't take my $$ to my grave. I'd like to live healthy and free from RL here and now. I want to help folks if I can. That's it. I have no benefit from sharing my journey. But I care.

[nightdancer in reply to SuperMNew]

We know you care. I am not questioning that at all.

[tbirchf]

I would love to find a wholistic doctor who can help my husband follow a protocol like this!

[SuperMNew]

I hope you can. Keep looking. Life is worth the cost, in my opinion.