Woo Woo Solutions to Serious Diseases

[subgenius]

I have Ekbom's Disease, aka "Restless Legs Syndrome." Its akin to Parkinson's (I take the same medication for it) in that its a neuro-transmitter disorder caused by an interruption of dopamine production in the brain.
Not only can't one adequately describe the symptoms/effects of the disease, but invariably there are those who, without knowing anything about it (and I've done extensive research) will tell you to go to a chiropractor/acupuncturist/herbalist, or whatever.
People with woo-woo answers to everything have no real understanding or empathy with people with real problems. And they have delusions of the grandeur of their own abilities.
They have such low self-esteem they have to try to show that they know more than the experts about a given subject.
I am confident in my neurologist's abilities (especially since I've researched the subject myself), and it is appalling that these jerks try and make you and the experts seem stupid by having an easy answer to anything.
Its a big problem when people rely on the advice of idiots who claim to know something just to satisfy their own personality disorders (not to mention greed), to the detriment of their own health and welfare.
There is no "alternative" medicine or science. There are facts and there are quacks.
One of the reasons I believe strongly in Mr. Randi's mission: I can feel his passion for eliminating deadly fake healers.
Just had to vent.
Anyone else out there with a serious medical problem that is offended by people telling you you're stupid for not following their nonsense advice?
http://www.rls.org/

[reprise]

I have lupus, and it seems like everyone except myself and my physicians believe they have the definitive answer to managing my condition. :rolleyes:

It's not nearly as disturbing as all the woo-woo "treatments" which people felt compelled to tell me about when my SO had AIDS, though.

[Denise]

Interesting topic. I looked at the website and found that I have had episodes of this very thing! For me it was always at night and I had to keep stretching the muscles in one of my legs over and over. It's hard to describe the feeling that made me move my leg but the website calls it like a tickle, and I imagine that's as close as an example as can be achieved. It's hard to sleep when you have to keep stretching your leg every minute for an hour or so.

I probably get this about once a year, and had it as a child as well. I can't imagine living with it all the time as you do. Does your medication help?

[subgenius]

Originally posted by Denise
Interesting topic. I looked at the website and found that I have had episodes of this very thing! For me it was always at night and I had to keep stretching the muscles in one of my legs over and over. It's hard to describe the feeling that made me move my leg but the website calls it like a tickle, and I imagine that's as close as an example as can be achieved. It's hard to sleep when you have to keep stretching your leg every minute for an hour or so.

I probably get this about once a year, and had it as a child as well. I can't imagine living with it all the time as you do. Does your medication help?
As with Parkinson's its not 100% effective 100% of the time. There are times when the medication does not "kick in". If there was NO relief from the symptoms I guarantee you suicide is not at all a remote option, and that is not a plea for help or pity.
For you, please be aware that it starts with occasional episodes, goes into remission and then comes back with more frequency.
It is progressive, and will get worse. This sounds bad, but the good news is there is more knowledge of it than when I first contracted it, and there are newer drugs being developed every day. And more research.
More good news, you have more of an idea of what the problem MAY be, and doctors are more aware of it.
Other good news: others are worse off.
Many do not seek treatment because the primary symptom is "an indescribable feeling." Try explaining that to your doctor.
If your doctor is clueless, go to one who is familiar with the disease. When I first got it they knew nothing and thought it was vascular. Now more, but not all, know more.
Please follow through, there is help.

[subgenius]

Regarding the "indescribable feeling" the best I can tell people is (when its bad) is "there's something more painful than pain."

[subgenius]

Originally posted by reprise
I have lupus, and it seems like everyone except myself and my physicians believe they have the definitive answer to managing my condition. :rolleyes:

It's not nearly as disturbing as all the woo-woo "treatments" which people felt compelled to tell me about when my SO had AIDS, though.
Pisses ya off doesn't it? People (like that) can't accept that there aren't easy answers to everything. And it trivializes your suffering.
I know you don't want sympathy, just understanding.
Michael J. Fox said something that still brings tears to my eyes: "Pity is just one step away from abuse."
I believe that.

[Denise]

Originally posted by subgenius

As with Parkinson's its not 100% effective 100% of the time. There are times when the medication does not "kick in". If there was NO relief from the symptoms I guarantee you suicide is not at all a remote option, and that is not a plea for help or pity.
For you, please be aware that it starts with occasional episodes, goes into remission and then comes back with more frequency.
It is progressive, and will get worse. This sounds bad, but the good news is there is more knowledge of it than when I first contracted it, and there are newer drugs being developed every day. And more research.
More good news, you have more of an idea of what the problem MAY be, and doctors are more aware of it.
Other good news: others are worse off.
Many do not seek treatment because the primary symptom is "an indescribable feeling." Try explaining that to your doctor.
If your doctor is clueless, go to one who is familiar with the disease. When I first got it they knew nothing and thought it was vascular. Now more, but not all, know more.
Please follow through, there is help.

I had hesitated to post about this because it doesn't happen frequently at all, and I assumed everyone had episodes of this. My grandmother has been told by her doctor that she had something called "restless leg" and now I wonder if this is what the doctor is talking about.:eek:

I often get muscle spasms in my hands or my eyelids, sometimes my legs. It usually lasts for a couple days and then I don't get them for months. It is just like a gentle tugging I can feel, and it's not too noticeable to other people. Also, it has become more frequent lately that I have body jerks when I'm going to sleep. Is there any connection with that?

[subgenius]

Originally posted by Denise


I had hesitated to post about this because it doesn't happen frequently at all, and I assumed everyone had episodes of this. My grandmother has been told by her doctor that she had something called "restless leg" and now I wonder if this is what the doctor is talking about.:eek:

I often get muscle spasms in my hands or my eyelids, sometimes my legs. It usually lasts for a couple days and then I don't get them for months. It is just like a gentle tugging I can feel, and it's not too noticeable to other people. Also, it has become more frequent lately that I have body jerks when I'm going to sleep. Is there any connection with that?
There may be. Please consult with a good physician. And keep in touch. Early diagnosis, treatment, and the avoidance of self-medication/bad advice is important.
There very well may be a genetic component, so what your grandmother was told is significant. (I hope she gets good treatment, too....it affects the elderly more)
Not only do I not claim to be an expert treater, but .....(see my signature)

[Denise]

Thanks, Subgenious!

Back to the topic I suppose... I think it's important to recognize that often times some of the older members of our families can be the most woo woo in terms of treatment. I'm thinking of the grandmothers that believe that it's a good thing to put butter on burns etc.

Sure some folk remedies have some merit, but they have usually been adopted by modern medicine and are no longer just folk remedies.

[subgenius]

Just like many old ideas (the bad ones that is: racism, e.g.) they will have to pass with time. Some people can't change, but everyone dies.

[Zep]

I'm not "neurological" but I'm definitely athsmatic. Turns out I have been since birth, and my poor suffering mother is also (worse than me!). I've been treating it actively with a variety of methods since I was a teenager, when I had my first hospital-worthy attack (let's just say the early 1970's, OK?).

So...I have been through plenty of the more woo-woo methods over the years. The standout stars have been:

Tolerance therapy: When I was young I was given a series of increasing potency allergin injections once per week (I seem to recall they were bee-venom) to "build up my resistance" to athsma-producing allergins (BTW, I've got some wicked allergies too). Result: I got increasingly heavy episodes of athsma each time, so much so that the last injection was abandoned in case I went into shock. This method has now been classified as being of no value at all and even downright dangerous!

Heavy exercise: I was forced to do lap-swimming every day, supposedly in an effort to "build up my lungs". All it did was make me very bored of swimming (which we loved as kids), excess chlorine (or salt-water) irritated by lungs and triggered athsma, and it did not build up my lungs anyway. Good exercise certainly but not an athsma cure. Other efforts in the same vein included various forms of long-distance running, which simply triggered an attack within minutes!

The "Buteyko Method": This is a "breathing therapy developed by a Russian doctor" that is supposedly based on the idea that athsmatics don't breath deeply enough and so have excess oxygen in their blood. The method is to do exercises while not breathing to "build up carbon-dioxide in the blood" and thus "trigger deeper natural breathing". Sounded mostly like crap dressed in scientific jargon from the outset (what about the more deadly carbon-MONoxide? Or the adrenalin affect?), and when I started asking persistent questions at the enquiry night I got a very rude brush-off. This "method" was never supported by scientific testing and now seems to have faded away too.


So where am I now? Happily doing just fine after some very good scientific research at a local major hospital and university research department. I now use a combo of proven inhaled drugs twice daily that gives me complete freedom from athsma with almost no side-effects. While I'm somewhat overweight (hey, I like good food!) I'm also well on my way to a karate black-belt.

But I do not recommend my medical regimen to ANY athsma sufferers - instead, I recommend they get tested by competent doctors and receive treatment that is proper for them!

Zep

[soccer_ref]

I was at a party last week and was chatting with a man and a woman about various subjects. One that came up was the man's help issues. The woman immediately jumped in and said that he should try homeopathic remedies. They were "low dose" (I corrected "no dose") but she didn't seem to care. There were clinical studies that showed they worked better than the placebo effect.

I guess I wasn't in the mood to get in a fight so I just walked away. Later, my wife told me this woman was a pharmacist! What the hell gives? Don't they teach science in pharmacy college anymore?

[Hydrogen Cyanide]

Originally posted by subgenius
...
People with woo-woo answers to everything have no real understanding or empathy with people with real problems. And they have delusions of the grandeur of their own abilities.
They have such low self-esteem they have to try to show that they know more than the experts about a given subject.
..

Woo HOO!!! I know what you are talking about. Not about your condition (sorry)... but about the Woo Woo folks trying to cure things they don't understand!

I have had my mother-in-law tell me after I explained that the solution she and her daughter had come up with for one of my kids condition was bogus and would not help:

"Well the doctors and scientists don't know everything"...

To which I wanted to scream (later when I thought of it): "But in order to determine what they do NOT know... you need to have minimum of knowledge to begin with!!"... but then there are things that must be left unsaid to keep in your family's good graces (and this is the "normal" side of my family)

Presently I am reading about kids being given questionable quack treatment... I do what I can (another thread).

But what is even closer to home is that my sister-in-law is getting sucked in and PAYING money to any and all sorts of weird things. She has an "internet support group" for her ailments (chronic migraine, plus some thyroid problems) that leads her to all sorts of weirdness.

She has thrown out all sorts of food and personal hygiene products because they had some mysterious ingredient... and then bought new stuff. She has been told to avoid foods with allergic properties... yet she can load up on soy (which is a top ten in food allergy) by some wacky naturapath (who did have good advice like to get some exercise... which my S-I-L ignored). She insists now on drinking just a certain type of bottled water. She has bought all sorts of odd and expensive supplements, including homeopathic ones.

The problem is that she is unemployed.

There was time when she was taking proper meds, getting some exercise and a bit of a social life. But then she quit her job... quit some meds, and has been spiraling down the road with her depression (one of the offshoots of chronic pain is chronic depression).

You can imagine what I think of the Woo Woo's sucking the vulnerable dry.

[Yahweh]

I was born with some kind of joint disease that gives me constant, never ending, severe pain in all my joints. It never goes away and thats the beauty of it!!! Its a form of arthritus.

Because of the arthritus I have to crack every joint in my body virtually nonstop. Yes, I go through and I crack my neck a few times, my back, shoulders, elbows, wrists, fingers, legs, and ankles almost every 30 to 40 seconds. Some people have accused me of having an obsessive compulsive disorder... no, thats not the case. My students always comment to me about my excessive cracking of joints. Sometimes they laugh because I'll be teaching and out of nowhere my hand will contort and twist and bend for a few seconds... oh well, I'll be their amusement for the day, doesnt bother me.

Heres a few of stupid "causes" of this "disease":
1. "Your bones are just growin'." Well... by now they would have stopped wouldnt they. I dont remember in highschool anyone complaining about constant constant pain and their bones are growin' too.

2. Heres one from my parents "Well, since you decided that you werent going to worship god anymore, god has decided to punish you." .... please never say that to me again because I fear I may VOMIT WITH DISGUST AND RAGE!

Heres the cures
1. First I given a placebo by my doctor. A month later I said "These pills I'm taking arent working, I'm no better than when I started". My doctor says "We were giving you a placebo before we introduce prescription drugs". Then I said "So I dont have to pay for them do I?".

2. Then I went to a chiropractor. I would rather sit at home and be in pain (which I've dealt with anyway for my entire life) than pay US$90 a week for some idiot bang my back for 15 minutes.

3. Aroma therapy. Doesnt work... but I wont say that me and wife didnt enjoy all those burning candles.

4. Green Tea. I was getting desperate.

5. Deal with it. Ok, I'm good at it.

No pills will work, no medicines. I have a natural "immunity" to most prescriptions anyway... it was funny when I broke my wrist as a teenager and they couldnt knock me for over 2 hours when a normal person is gone within number 97 of counting back from 100. In all honesty, the only that has ever been marginally successful at treating the pain has been back in highschool when I tried marijuana... but you can see the problems that would cause. Dont do drugs, kids.

As far as I'm concerned, all I need is the never ending loving affection that my wife provides.

To whoever said "Whatever doesnt kill you only makes you stronger" I will reply back with "F**k you".

[kookbreaker]

Originally posted by Yahweh

To whoever said "Whatever doesnt kill you only makes you stronger" I will reply back with "F**k you".

Neitzche's dead dude!

Of course, he was saying "Whatever does not kill me ..."

[Ruby]

Originally posted by subgenius
I have Ekbom's Disease, aka "Restless Legs Syndrome." Its akin to Parkinson's (I take the same medication for it) in that its a neuro-transmitter disorder caused by an interruption of dopamine production in the brain.

I have "Restless legs syndrome" too. I have fibromyalgia and my Doc believes it's related to that for me.

[Paul C. Anagnostopoulos]

Yahweh, what does cracking your joints do for you?

~~ Paul

[jj]

Originally posted by Yahweh
I have a natural "immunity" to most prescriptions anyway... it was funny when I broke my wrist as a teenager and they couldnt knock me for over 2 hours when a normal person is gone within number 97 of counting back from 100.

Heh. Well, I go out fast enough. I wake up just as fast.

"Hey, Doctor, that's starting to sorta hurt"

This has been known to startle the poor doctor. :)

(It's only 3 for 3 here, once as a kid, twice as an adult, but I figure 3 of 3 is a pretty solid number.)

[subgenius]

Originally posted by Ruby


I have "Restless legs syndrome" too. I have fibromyalgia and my Doc believes it's related to that for me.
What treatment for the RLS? I'm on Mirapex....working as good as can be expected for now. Unfortunately they all lose their effectiveness over time and you have to move on. New ones are coming.

[Bearguin]

A few years back, when I was in a madder point in my life, a "friend" tried to explain to me how reflexology would help my wife get pregnant.

This despite the hormone injections and pills and all the other crap the actual doctors had us go through. All she needed was her feet rubbed the right way.

I wasn't rude (surprisingly) but she knew I did not appreciate her stand due to my complete silence and glare.

Have not spoken to her since and probably never will. She was a nice enough lady but just pulled her garbage at the wrong time for me.

No question I could handle it better now.

[Yahweh]

Originally posted by Paul C. Anagnostopoulos
Yahweh, what does cracking your joints do for you?

~~ Paul
Well if I dont then within minutes I pass out. It happened at a friends wedding when I was trying to be very still and not attract attention... instead I've realized its easier just too look very figety rather than go catatonic. The videos from the wedding werent quite to what I expected... first laughter... took them about 30 seconds to see something was wrong.

[subgenius]

Originally posted by Yahweh

Well if I dont then within minutes I pass out. It happened at a friends wedding when I was trying to be very still and not attract attention... instead I've realized its easier just too look very figety rather than go catatonic. The videos from the wedding werent quite to what I expected... first laughter... took them about 30 seconds to see something was wrong.
But to be more specific, what does cracking the joints do, actually, scientifically.
I have asked highly qualified orthopedic surgeons and got varying answers. I am assuming your's may be: it gives me relief.
But I wonder what the heck is going on.

[Yahweh]

But to be more specific, what does cracking the joints do, actually, scientifically.
I have asked highly qualified orthopedic surgeons and got varying answers. I am assuming your's may be: it gives me relief.
But I wonder what the heck is going on.
It provides relief. Its very simple. It works for me. I dont know enough about "jointology" to offer some scientific reasoning. But hey, it might be all in my head I might just be some kind of cynical OCD sufferer who invented symptoms to an imaginary affliction... I would that is certainly an idea someone may have but its incorrect in this case. Warm water also offers satisfactory relief.

[subgenius]

Originally posted by Yahweh

It provides relief. Its very simple. It works for me. I dont know enough about "jointology" to offer some scientific reasoning. But hey, it might be all in my head I might just be some kind of cynical OCD sufferer who invented symptoms to an imaginary affliction... I would that is certainly an idea someone may have but its incorrect in this case. Warm water also offers satisfactory relief.
I never argue with success.
(edited to add: OCD and other sufferers don't "invent" their symptoms, its not a conscious process.)