A CURE AT LAST

[Dragan2001]

I have suffered with RLS syndrome since I was a child. I am now 34. Everyone on my mother's side of the family has it. It was horrible when I was pregnant! I didn't even know that it was a diagnosed ailment until I started doing some research about "restless legs" last year.
Anyway, about a year ago I was listening to an infromercial about a Calcium Magnesium supplement that has Vitamen C added to it. Apparently, if you take Calcium and Magnesium, most of it is not absorbed unless you also drink/eat something acidic with it to aid in absorption. This product promised instant absorption and an immediate "relaxing" feeling in the muscles. I thought that it couldn't hurt and I needed a Calcium supplement anyway. When I have symptoms, I take this and within 10 minutes the RLS is completely gone. I have my whole family on it and they all think it is a miracle. I have even written to Dr.s who are doing research on RLS.
I have nothing to do with the people that make the product. It is simply Calcium and Magnesium in a powder form that contains citric acid and lemon juice powder. I know that there is a lot being said about iron and dopamine now associated with RLS but this stuff works. I don't know how. My husband, who is a physician, thinks that the Calcium and Magnesium must somehow effect the neuoreceptors or something. Anyway, the product is not cheap. If you can find a powdered Calcium and Magnesium supplement try taking it with orange juice or something acidic. This product has been a miracle for my family. Again, I have nothing to do with the makers of the product and I don't even know who they are. My mother, who suffers the worst, takes this stuff twice a day and never has symptoms anymore. Me and my brother and sisters take it only when needed. It only takes about 10 minutes to work. If you try it, please send me feedback! The website for the product is www.Calmax.tv. The product is Calmax. Again, you can probably find the generic equivelent in the health store. Please let me know if you try it!
Sincerely, Diane, NY

[jumpyowl]

Sorry Diane: but your post sounds like an infomercial. What you are saying is that calcium gluconate and magnesium carbonate will cure RLS if taken with a weak acid such as ascorbic and citric acid. This is, of course, misleading.

If it were only that simple and easy! If one has no deficiency in magnesium ions as compared to calcium ion intake, then this stuff will have no effect on RLS at all. Magnesium supplements are known to help with muscle cramps but only if there is deficiency. RLS is more than an occasional muscle cramp.

Originally the magnesium is contained in the pulverized product you advocate as a carbonate. Magnesium carbonate does not dissolve in water so this salt changes into magnesium citrate and ascorbate while being dissolved. Once you swallow it the relatively high concentration of hydrochloric acid (pH = 1) in the stomach will change both alkali metals into chloride. The citric acid (lemon juice) is there only for flavor.

False hope may yield a placebo effect but that is certainly no miracle.

[Sole]

I took Calmax, when I was pregnant because I couldn't take Clonazapam during my first trimester. It worked very well for me, during the nights when my symptoms were mild to moderate. But on the nights when they were severe, it didn't help at all. I understand your joy about finding something that works. I was so happy when my mom gave me a bottle and it actually worked. It's gotten so bad now that not even my prescription drugs work anymore.

sole

[jumpyowl]

You have been much nicer to Diane than I was, Sole. You must be a really nice person. To atone for my brusqueness to Diane, I wrote a long reply to you in your thread.

Here I just want to say, no wonder medications are not helping you. You are taking the wrong ones! For details, see my reply to you in your thread!

Here is the fourth suggestion: explain the situation to your husband and take him with you on your next visit. Make an appointment ASAP, claim emergency, it is justified.

[Sole]

Jumpy,

I will definitely take my husband with me! How stupid that it would make a difference but I know you're right. I should have been taking him with me all along. I go to his appointments for the very same reasons and we always get good results. Although he does see a different doctor. HE has REAL insurance!

I agree that Diane's post sounded like an infomercial but if I found something that worked, I'd probably write something similar to what she did. In fact, years ago, after suffering from anxiety and depression for sooooooo long, I was introduced to Paxil. The first prescription medication I'd ever taken, besides antibiotics. I was so elated to finally find relief from the anxiety and depression that I set out to be the new poster child for Paxil. You think Diane's bad..... I haven't taken it for many years now and I laugh when I look back and think of what people must have thought of me. I SHOULD have been receiving royalties from the manufacturer!

Sole

[jumpyowl]

My daughter really gave me hell when she saw what I wrote to Diane. I really have nothing against her, but I mainly reacted to the word "cure." I wish there was a cure for this torturous affliction. You are right, she probably repeated what she saw on the infomercial. The rest of my criticism was directed to the manufacurer's web site.

I was crazy about chemistry when in the 8th grade so I managed to take three years of chemistry in high school. Thanks to not teaching chemistry nowadays in high school, those infomercials have a field day.

[Sole]

I think, perhaps, people use the words "cure" and "relief" interchangibly.

Three years of chemistry, eh? That's a lot but me thinks your experience goes far beyond highschool chem.

sole

[jumpyowl]

What is going on, Sole? I was notified five times ( at 2:35, 3:45, 3:55, 6:33, and 7:34 (all pm's) that I have a private mail from you. They all led to your single private mail sent at 6:33 p.m.

Herewith I answer you by quoting my post to Ruby on June 15.

Hi, Ruby:

I do not feel qualified to give advice but I have some opinions, gut feelings which I will be happy to share. Actually I had this gut feeling early on about your medication Ruby. To quote from one of my early post:

Quote:
(It seems to me that there are some primary attacks on RLS medicationwise, to apply it to your case):

1. (nonergotamine) Dopamine Agonist: You are taking Mirapex

2. Opioids/benzodiazepines/nonbenzodiaz., sleeping draughts: skipped

3. anticonvulsants: Neurontin

As you and your doctor have already guessed the antidepressant Wellbutrin is apparently not doing much good for RLS (actually this is probably the one doing the least harm)

It is revealing and quite believable that attacks have to be preceeded by the medication to be effective in preventing them.

Now a month or two later I would change this into the following:

There are four primary approaches in medicating RLS:

1. Sedative/hypnotic medications benzodiazepines and non- benzodiazepines (you are not on any of these)

2. Dopamine agonists (you are on Mirapex)

3. Anticonvulsives (you are on Neurontine)

4. Analgesics (opioids) (you are not on any of these)

You have tried with not much success #2 and #3. You may have tried #1, in any case those are for milder cases. What you have not tried and what should be tried in my opinion is #4.

We have both seen many cases when the anti-Parkinsons and antiepileptic medication not only did not help but actually made things worse. And these were the very people who eventually received help from opioids.

The easiest to obtain is Hydrocodone but what is often used is Ultram. They also help me. Often in combination with something from the group #1. Klonopin is often mentioned but that may not be good for you because it has a long half life extending into the next day. Flurazepam or Lorazepam I found helpful. (My wife likes Lorazepam but does not like Flurazepam.)

I hesitate to go too strong on this because I need more experience on my own.

For myself, I would like to try #2, especially since anticonvulsants do not help consistently. The trouble with #2 and #3 is of course that they were developed for different neurogenic diseases. They are powerful drugs and RLS is clearly an off-label use (suggested on the basis of trial and error).

Sole, if you want to find the whole post or others from me, go to my profile, click on (very small print, hard to see) all my posting and it will be given to you in a reverse chronological order. Excellent feature because it gives you not only the title but a partial sentence or two.

Sole!!! What I need from you urgently is your decision on what type of letter to write. If I can write it directly to your doctor, it will have a better chance having a positive effect on her (I elaborated on this in my private letter to you - I hope you get it.) The way private messaging works today you may not even have gotten mine (or got it 10x).

I got up at 4:15 am today because my mind kept getting this letter to your doc composed. So please let me know because if it goes to her by snail mail (and to you by e-mail) it should be mailed by Tuesday (July 6) the latest.

I probably managed to get you mad as I had my BP up. However, when dealing with her you be cool and firm. Let her get mad! However, I am glad you are a fighter!

Her only defense (and it is not a good one) is that this affliction is not widely known. Otherwise, her mistreatment would be actionable. But even that weak defense does not stand up because she should (theoretically) learn something about RLS before she prescribes for it.

So please let me know which letter to write!

[Sole]

Jumpy,

I guess the pm feature is going crazy or something. I sent you two pms, yesterday. One asking about that post to Ruby. The other giving you my private email to email me the letter you're writing. It sounds like you only received the one. I haven't received any from you.

Feel free to write the letter how you see fit. I trust your judgement. I'll send you another pm with my private email again. Let me know if you get it.

sole

[Guest]

Hey,
I am new to this site. I am so happy I found it too. But I just feel that everyone should be able to speak their mind (right or wrong) without being criticized or talked badly about. We all have sometimes used the word "cure" and meant to say the word "relief" once in our lifetimes. Chill out, be nice, and continue to do that great work that you do. If someone offends you, don't take it personally like you do, just take what you need from the posts and throw the rest out. No harsh words are needed here. We all have enough problems and stresses in our lives don't we. Can't we all just be friendly all of the time and don't jump down anyone's throat for their misused words, incorrect meanings of words, or their own personal opinions and views on this disorder. We are all suffering from it, it can be very frustrating at times. It affects our whole entire lives; work, family, moods, sleep..............that's enough torture.
It's better to be kind to everyone whether you want to or not; one day you might need them; and always remember to treat others the way that you would like to be treated. Opinions are like A__holes --- everyone has one.
Sorry to be so blunt on that last sentence
Happy sleeping.

[jumpyowl]

or is it Dragan2001?

You posted:

But I just feel that everyone should be able to speak their mind (right or wrong) without being criticized or talked badly about. We all have sometimes used the word "cure" and meant to say the word "relief" once in our lifetimes. Chill out, be nice, and continue to do that great work that you do.

I completely agree. I thought this is what I did in my post. If you re-read it you will see that I was stating informative facts and my main purpose was not to put Diane down but enlighten everybody by rehashing some basic chemistry which is mostly missing from public education. I am (unlike others) try to stick to the issue and not engage in personalities.

You are right there is some criticism in it but it was directed to the company, the website of which I visited. I found it incorrect and I thought it is my duty to correct inaccuracies. (I may have left a comma out somewhere, but it was really aimed at the company and not the "messenger.")

If someone offends you, don't take it personally like you do, just take what you need from the posts and throw the rest out. No harsh words are needed here. We all have enough problems and stresses in our lives)

This is very true. However, I was not the one who was offended here or even taken anything personally. No way I can take it personally when a company uses misleading wording in promoting their product. The chemist in me may bristle a bit, and the scientist may want to correct it. It is never personal with me. My main goal is always to provide correct information. But it is true I could have been more diplomatic about it.

I was immediately warned about that by someone (my lady conscience) after my post and I agreed with her. What I should have done is post again and correct the false impression I possibly created.

Well, for this I sincerely apologize to Diane. What I never want is to hurt someone's feelings. But I am also blunt about correcting mistakes because for some strange reason I feel it is my duty. I also expect others to correct any mistakes I made, how could I learn otherwise?

With regards to your saying about the omnipresence of anus. It is very clever, gave me a chuckle, as I have not heard it before.

Where I disagree with it is the implication in its use that all opinions are of the same value. However, this could not be true. The learned "opinions" must be valuable because consultants get paid for them.

Now I get off my soapbox. I think that you made a very important point which we all should keep in mind when we post. I will sure to be more careful in the future and try to avoid injuring the messenger. Fair enough?

[Guest]

I have been visiting this site since the site first opened. I log on as a Guest I do not register because I do not want to. I mostly read and do not post much, as I am sure a lot of people do if you look at the views compared to replies. Actually Jumpy I was not really talking about the case with Diane. I was more refering to you in general. I think that a lot more people might speak their mind on this discussion board if several of you and not just you jumpy were more open to peoples ideas and beliefs (whether they are right or wrong) and more nice to people in general. Now the guy who said that rls is bullshit well, he must be some crazy doctor that lost a patient over this or something. All of us who suffer from RLS know that it is real without a doubt. Oh, I do remember one more person I cannot remember what her name was but she said she found a cure for rls - I think everyone was harsh on her and I'm surprised to see that some people still bring that up on here. She as well as others of us are excited when we find relief, and we all hope that our relief will work and help others as well. There are just a few on here that in my opinion are too quickl to criticise, maybe it's my old age I do not know, but I will never say anything negative. If I have nothing to say positive then I say nothing at all. If I ever want to use the word cure I will, although I think it's a harsh word to use, but if I find better relief than what I have one day, and I use the word cure that is my business. Again, take from the posts what you want and stop being so concerned with correcting everyone so quickly. We all read all of these posts, let us make our own judgement based on what everyone says and not just what a few of you think. Oh and it was nice of you to apologize to Diane.
words from the wise old professor.

[jumpyowl]

From one old professor to another:

Dear old prof! Would you mind revealing in what field are you a professor? And how old is old?

I was more refering to you in general. I think that a lot more people might speak their mind on this discussion board if several of you and not just you jumpy were more open to peoples ideas and beliefs (whether they are right or wrong) and more nice to people in general.

Dear prof! I will have trouble answering this general condemnation of not being nice. Perhaps the word is tolerant you really meant. There is something to be said for tolerance, you are right about that. I must have been really deaf and dumb if I have not noticed that what I am doing mostly is to put down people ideas and criticising them. For I really was not aware that I have been doing that. What I thought I was doing is listening to people's problems, encourage them to provide more information and then try to analyze their situation so I can offer or suggest some help. I do not know how I could be so mistaken.

Now the guy who said that rls is bullshit well, he must be some crazy doctor that lost a patient over this or something. All of us who suffer from RLS know that it is real without a doubt.

I guess you dear old prof can find some redeeming feature even in that misfit who was clearly crazy as a loon. Not only that but he actually picked on one of the patients and threatened her if she was not minding his raving and following his ill advice.

So that is fine, since we do not believe what he was saying. However, telling him.... that would not be nice.

Oh, I do remember one more person I cannot remember what her name was but she said she found a cure for rls - I think everyone was harsh on her and I'm surprised to see that some people still bring that up on here.

.

Well, her name was miamoss. You should re-read that thread. She started out reasonably enough but then she started to lose perspective. Someone warned her that she could do some harm by her unsubstantiated claims and she went berserk. No logical reasoning could have penetrated her walls of defenses. She became more and more vicious. Clearly she had serious emotional problems. It was ironic that she was studying to be a counselor in psychological and emotional disorders. If left unchecked she will probably will cause many patients to become more miserable than they were to begin with. So what she did was fine we just could not be nice to her? Since when is trying to help someone is not nice?

There are just a few on here that in my opinion are too quick to criticise, maybe it's my old age I do not know, but I will never say anything negative. If I have nothing to say positive then I say nothing at all.

Now I am in a blue funk. As I see it you have not written anything for 6 months. I guess you could not think of anything nice to say. Now you suddenly posted three times and none of them was nice! Did not you write that "If I have nothing to say positive then I say nothing at all" ? How do you explain this discrepancy?

The only people I say unnice things about are doctors who instead of helping patients they enhance their mysery. So we should just suffer in silence? I wonder if that piloshopy would work when you are observing a mugging. To disapprove of the muggers would not be nice so you would just watch them. wisely nodding your head and try your best not to show any sign of disapproval?

If I ever want to use the word cure I will, although I think it's a harsh word to use, but if I find better relief than what I have one day, and I use the word cure that is my business. Again, take from the posts what you want and stop being so concerned with correcting everyone so quickly.

Yes, you have the right to say erroneous things but it is not going to help anyone. I thought we are here to learn from each other. Spreading untrue statements are not going help and may even harm someone. And just perhaps you do not have the right to do the latter.

We all read all of these posts, let us make our own judgement based on what everyone says and not just what a few of you think

So if someone is in deep trouble and is practically begging for help, should we tell them to read the posts and draw their own conclusions? (Of course if we followed your example there would not be any relevant posts to read.) I am afraid often we do almost just that. But every time we do so, I feel that somehow we failed those patients, especially if one of us could have helped but did not, perhaps for the reason of not wanting to interfere?

I am not aware that anyone of us is trying to dominate the scene or attempting to force our convictions on others. Everyone is free to do what we do and the more the merrier.

I cannot help but wonder what made you finally to come out of your observing position and offer your criticism anonymously? What are yoiu trying to accomplish? Make all of us inactive and torpedo this wonderful effort that has just begun? Do you not like the fact that some people, after had been helped, now offer help to others? Does it bother you that some of us want also to give and not only take?

[Guest]

Respectfully,
Your attitude in your recent posts has only confirmed what my initial concerns were. Thanks for showing everyone that you aren't such a nice guy and you do criticise way too much
I just love confirmation.
I will not be responding to you anymore. I will not give you anymore power here. I use my power towards people who deserve it.
Take care old man.

[sardsy75]

I wonder whether you would consider publicly posting some of your private e-mail to me. Have you seen the latest knife stab our anonymous arch enemy delivered recently?

http://beta.restlesslegs.org/phpBB2/viewtopic.php?p=1825#1825

Your nice sentiments would come handy.

What my dear friend Jumpy was referring to is below...

From: sardsy75
To: jumpyowl
Posted: Sat Aug 21, 2004 5:52 pm
Subject: RE: Nice Sentiments

All i can say is "OUCH"!

Even I copped a barb in there for my subtle comments about Neurontin, but without being named. But hey, I didn't enjoy the hallucinations, so it was far from being the "Cure" for me! (BTW, I have tried it twice in recent months, out of sheer curiosity and both times, same thing, really "cool" hallucinations)

...

I find it interesting that those who berate us dont have the courage to "come out in public" and do it, prefering the cowards method of hiding behind the anonymous "guest" feature. It makes me wonder if they really know what they are on about, and if not, they know that by remaining anonymous, they are "safe" to slip back into the unknown realm of cyberland. Leaving us uptight and put off by what they have said.

I know there have been times when you've disagreed with me and some of my methods, but at no stage have I ever not listened and taken on board what you have said. You have never once forced your opinion on anyone in this group, simply provided an ear for listening and some advice.

You have my support all the way Jumpy!

Luv ya heaps!
Nadia

Jumpy, you replied in part as follows:

I do not think people or friends have to agree on everything, do you?

Friendship and learning would not be half as fun as it is if we could not have healthy debates about things!

Heck, my best friend and I debate upon a whole myriad of topics every single day, and by the end of our debates we are usually in fits of laughter. If its not resolved though, we agree to disagree and find another topic to debate. This does not drive us apart, but brings us closer together.

It's kinda like marriage (or any partnership or friendship really), you have your ups and downs, but neither party should deliberately try to attack or put the other down for no good reason, no matter what the argument is about. You are in this relationship for the long haul because when you find yourself stuck between a rock and a hard place, it is those people you have treated with love and kindness who will come to your rescue ... your friends and family.

Trying to attack and outsmart someone psychologically, whilst hiding behind anonymity is not being part of a relationship/friendship/partnership; and this will lead to a life of loneliness.

We are all here as friends who have the same problem and who are collectively doing their best to improve on the situation, not only for ourselves, but for every newbie who is diagnosed and comes through our "doors" for help and advice. As a group we are far stronger than the one or two "bad apples" trying to ruin it for all of us!!