Dercums_Disease : Messages : 24986-25015 of 29316

Global Health Network

http://www.GlobalHealthNetwork.org

Group Guidelines and Rules of Netiquette

The Group owners/moderators will enforce these guidelines!

The Global Health Network support group community gives persons affected by various diseases or disorders, family members, friends and medical professionals a place to meet, interact, and share ideas with each other. Just like a real community, you may have different opinions than other group users. Our Group experience is best when people remember a few rules. Herein, we have set out guidelines and Rules of Netiquett for participation in our group. Here are some of the key things to remember:

You may not harass, abuse, threaten, or advocate violence against other members or individuals or groups.
You may not post content that is harmful to minors.
You may not post content that is obscene, otherwise objectionable, or in violation of federal or state law.
You may not add members to a group without their permission.
You may not use the group for commercial or advertising purposes.
You may not post content which infringes the intellectual property, privacy or other rights of third parties.
Some content may be more appropriate in some contexts than others. We reserve the right to remove content that it determines deemed to be inappropriate and in violation of our rules.
You may not use the group solely for the purpose of storing and archiving files.

If you are unsure whether your content is consistent with these policies, please err on the side of caution and do not post it!

NOTE: In the beginning, posts will be moderated to ensure adherence to the group Guidelines and Rules of Netiquette.

Our Right to Terminate Group Membership.

The group owner(s) and or moderator(s), in their sole discretion, may terminate or remove any content or your membership immediately and without notice if (a) it is believed that you have acted inconsistently with the spirit or the letter of the group, the group�s guidelines, or (b) believed you have violated or tried to violate the rights of others. Please help us keep our group an enjoyable and positive experience. If you see a post that violates our rules, please let us know by contacting David Hughes at dhhughes@....

Read on for Group Rules of Netiquett!

Rules of Netiquette

Joining a List/Discussion Group

When you join a list, save your introductory welcome message! Welcome messages generally contain important information about the group -- the rules and guidelines, instructions on how to post to the group, how to subscribe, how to unsubscribe, etc. Follow any and all guidelines that the list owner has posted. The list owner establishes the local "netiquette" standards for her/his list and retains the right to deny access to the group for those violating the rules.
When you join a list, monitor the messages for a few days (or read through the list archives, if available) to get a feel for what common questions are asked, and what topics are deemed off-limits. This is commonly referred to as lurking. When you feel comfortable with the group, then start posting.
See if there is a FAQ (Frequently Asked Questions) � for a group that you are interested in joining. Veteran members get annoyed when they see the same questions every few weeks, or at the start of each semester. Our group does have a FAQ page available in the database.
Use your own personal Email account; don't subscribe using a shared office account. There are many free email websites out there -- Yahoo!, Hotmail, etc. - you may find it useful to use one of these type of accounts for all of your list mail. Also turn off any Auto-Responders - they create extra mail for people posting to the list and can cause people to stop posting.

Posting - General Tips

Keep your questions and comments relevant to the focus of the discussion group.
Do not post in ALL CAPS. Capitalize words only to highlight an important point or to distinguish a title or heading. *Asterisks* surrounding a word also can be used to make a stronger point. Capitalizing whole words that are not titles is generally termed as SHOUTING!
Do not send "Me Too!", "Thank You", etc. messages to the group! Send those directly to the original poster. A private "Thank You" is nicer too!
Do not send attached files. If you have a file that you want to share, advertise that you have them available and those who are interested can request them via private e-mail off list.
Do not send SPAM. SPAM includes virus warnings, get-rich-quick schemes, secret cookie recipes, political propaganda, and chain letters (i.e. Pass this letter on to 10 people to have �Good Luck�). Most of these are hoaxes and are not welcome on mailing lists. They only serve to irritate people. Definition of Spam: It is unsolicited. It is part of a �mass mailing or the sender is a stranger to the recipient. (The recipient has never had a willful personal contact with the sender.)
Try to read through the day's messages before responding so that twenty people don't end up answering the same question. Keep the messages that you think you'd like to respond to and delete the others. Then go back through and begin your replies. If you can, put your replies all in one post (known as combining posts).
Do not send or forward personal email to a list or another person without permission. This is a copyright violation and a serious breach of privacy and you may be removed from a list for doing so.
When going away for more than a week, unsubscribe or suspend mail from any mailing lists or LISTSERV services. Directions for how to do that should have been included in the introductory welcome message that was sent to you went you subscribed.
When replying to a message posted to a discussion group, check the address carefully to be certain it's going to the intended location (person or group). It can be very embarrassing if you reply incorrectly and post a personal message to the entire discussion group that was intended for an individual.
Use discretion when forwarding a long mail message. It's preferable to reference the source of a document and provide instructions on how to obtain a copy. If you must post a long message, warn the readers with a statement at the top of the mail message. Example: WARNING: LONG MESSAGE
Resist the temptation to "flame" others on the list. Flaming is the act of responding in a highly critical, sarcastic, or ridiculing manner - especially if done on a personal level. Remember that these discussions are "public" and meant for constructive exchanges. Treat the others on the list as you would want them to treat you.
Do no send "unsubscribe" requests to the list. Other people on the list are not interested in your desire to be added or deleted. Any requests regarding administrative tasks such as being added or removed from a list should be made to the appropriate area, not the list itself. Refer to your introductory welcome message for instructions on how to unsubscribe or change your subscription settings. You were able to subscribe on your own, you should be able to unsubscribe on your own as well.
Don't feel obligated to send a personal introduction or biography to the list when you first join unless the list guidelines specifically request that you do so. However, if someone does post a message of this type, it's OK if current members wish to welcome these people into the group and make them feel at home. Doing this on low volume lists helps to stimulate conversation. On high volume lists though, it is suggested that these people be welcomed using their private email address rather than have several welcome messages cluttering up group related discussions.

Posting - Subject Lines

Be sure the subject line reflects the topic. In other words, don't auto-reply and start a new thread leaving the old subject line in the header. This of course, providing that your software will allow you to change the subject. (I don't know of any email program that *doesn't* allow it.)
Put your entire comment in the body of the message. Don't begin your message with a few words in the Subject line and continue in the body of the message. That leads to discontinuity of the message and defeats the purpose of the Subject Line.
If you receive your list mail in Digest form, change the subject line to appropriately reflect the topic of your post. A subject of "Re: Digest xxx" helps no one.

Posting - Quoting

When quoting another person, edit out whatever isn't directly applicable to your reply. Don't let your mailing software automatically quote the entire body of messages you are replying to when it isn't necessary. Take the time to edit any quotations down to the minimum necessary to provide context for your reply. Nobody likes reading a long message in quotes for the third or fourth time, only to be followed by a one line response: "Yeah, me too."

What does quoted text look like? Email programs can display quoted text in a variety of ways, but the most common is for each line of text to be preceded by the "greater than" symbol (>).

> This is quoted text

Some email programs will simply add the line "--- Original Message ---" (or something similar) to the top of the previous message with the expectation that you will type your reply above that. While this style of quoting is okay in a business situation -- that is, when you are having a discussion with a co-worker and would like to keep the entire message thread within each email -- it is definitely NOT okay when using discussion lists, as it only serves to make the mail difficult to read. If you are using an email program that quotes in this fashion, you will need to manually create your quoted text. The simplest way to do this is to edit out the text you don't want and add two slashes ("//") to the beginning and ending of the text you'd like to quote.

//This is also quoted text//

The number one rule of quoting is quote judiciously. Quote only what is essential to make it possible for the reader to understand what your posting or email message is about. As a rule avoid quoting an entire message (signatures and all). It is not judicious to quote, say, a hundred lines of discussion just to input a single line of one's own. Proper quoting is a skill. Please devote some time to working the quote appropriately. Don't be lazy in this respect.

Leave a blank line between the quoted text and your reply or else your text and the quoted text will difficult to distinguish from each other.

Where is the best place to put your reply? Above or below the quoted text?

BELOW! Some more recent standard email and newsreader programs have assumed a very problematic feature. They include the message which you are responding to below your message and expect you to type your reply above it. Don't allow that to happen! The proper order is

>Quote 1 (properly pruned)

Your response 1

>Quote 2 (properly pruned)

Your response 2

In other words, put each appropriately trimmed item that you choose to quote before each of your own comments respectively. Remove any remaining "post quoting." Let me emphasize. Do not leave the entire earlier posting, which you have been responding to, at the end of your own posting.

Answering above the original message is called top posting. This is sometimes, called �The Jeopardy Style.� Discussion groups are Q & A not A & Q.

These things SHOULD NEVER be in quoted messages:

Headers or any Subject, Date, From, Reply-To, To, information, nor any general salutations.
Entire posts! Keep your quoted lines down to 4-6 for each different issue you are addressing.
Widowed quote lines. This means a line consisting of only one word getting stuck between two regular length lines of quoted text. You make the digest listing TWICE as long when you allow that. If the quoted material comes out with an orphaned word, take the time to move everything around so there aren't a bunch of holes in your post. Often this is a problem with keeping the font for your mail program too low. Please change to a bigger font size if your quotes are producing orphaned words.
Sig lines, signature text, ads or footers from previous posts (you know, like the ones that tell you how to unsubscribe or how to contact the list owners, etc.)

Posting - How Do I Edit My Messages?

Help! I've been asked to "edit my messages" but I don't know how!

We were all new once, so don't let it bother you that you don't know how to edit. :) Editing a message is very easy. With a little practice, you'll wonder how you ever got along without it!

When you are replying to a post, hit the REPLY button just as you have been doing. Hitting the REPLY button will include the entire OLD message in the NEW message you are creating. The goal of "editing" your message is to get rid of any information from the previous post that you don't need in order for your reply to make sense.

To edit, put your cursor at the top left of the section you DON'T want to include (for example the To/From/Subject stuff or the message footers and people's signature lines. Click and hold the left mouse button and drag across the section to highlight it. Then hit both the delete key and the space bar or enter key (whatever is comfortable for you) and it will remove the unwanted section. If you accidentally remove more than you intended, go to the menu bar at the top of the screen, look under EDIT and click on "Undo".... then start again. 'Undo' is also available from the menu that pops up when you right click on the mouse. Or pressing the CTRL button along with the Z button will also "undo" the last action.

Also, when you are replying to different portions of a previous message, it is normal procedure to skip to the different portions you are replying to using the "question, answer, question, answer" format discussed in the previous section. Just make sure you hit the Enter key to leave a space after the quoted text and include your comments below that section of the message so that people can tell where the quoted text ends and your replies begin. It makes it so much easier for everyone to understand what you are replying to.

You might be wondering why we ask people to please edit their messages. There are many reasons to dislike excessive quoting. The most common are:

1. Some people are visually handicapped and use "screen readers"

2. Some people pay for their download/transfer usage or pay for their time online on a per-minute or per-hour basis.

3. It clutters up the Digests and makes them darn near impossible to read.

4. It makes it more difficult to follow the discussion. If your reply looks like it's part of the quoted portion, it can easily be missed. Also, if you don't include *any* quoted material, your reply won't make any sense to anybody. But most importantly,

5. The List Mom doesn't like unedited posts. Can we say "pet peeve?" :)

ACRONYMS/SHORTHAND

Internet users in general have developed their own shorthand for e-communications. There is a comprehensive list of e-shorthand and emoticons (those little smiley faces made up of keyboard characters to indicate emotion) that can be found at the website here: http://www.stevegrossman.com/jargpge.htm

Another smaller, yet Early Edition skewed list can be found here: http://www.geocities.com/Hollywood/Makeup/3281/acronym.htm

For anything not covered in either of those sites, the general thing to keep in mind is that fans of a particular series will most often make acronyms out of the episode titles (DWAR for "Don't Walk Away Renee," etc.), out of the character names (GH for Gary Hobson), or out of the actor names (FS for Fisher Stevens). Keep those things in mind, and you shouldn't have any troubles.

Some commonly used acronyms/emoticons include:

LOL = Laughing out Loud
ROFLOL = Rolling of Floor Laughing out Loud
TPTB = The Powers That Be
TIIC = The Idiots In Charge
OT = Off Topic
TAN = Tangent
IMO = In My Opinion
IMHO = In My Humble Opinion
YMMV = Your Mileage May Vary
<g> = grin
<G> = big grin
<eg> = evil grin

Acknowledgements:

Information contained in this email netiquette document has been culled from various sources. The list below contains some of those sources as well as other informative documents on Netiquette and proper quoting techniques. I recommend reading them all too thoroughly familiarize yourself with the process. Many of them are geared towards Usenet users, but the principles are the same.

ListManager's FAQ Page with section on "How Do I Edit?" - geared towards Onelist/eGroups/YahooGroups users.

Quoting Text in Replies from the news.newusers.questions FAQ.
A bit more on the Netiquette and quoting by John Corliss.
Quoting from Zen and the Art of the Internet.
Trim down your quotes in Email Group Netiquette Guidance
Email Quotes and Inclusion Conventions
Quoting in JafSoft Limited's Introduction to the Internet
Proper quoting Alex D. Baxter
The Basic Rules of Netiquette; search for "Quoting"
On netiquette by Julie Waters; search for "Quoting".
Email Netiquette by Randy Ryan
http://www.ultranet.com/~mobius/Roadmap/map07.html
http://www.geocities.com/CapitolHill/1236/nomime.html
http://www.uwasa.fi/~ts/http/quote.html
http://www.uwasa.fi/~ts/http/tsfaq.html
Configuring Mail Clients to Send Plain ASCII Text from G. Boyd

This document, as well as the complete "Early Edition Lovers" list rules can be found at: http://groups.yahoo.com/group/earlyedition/files/EEL_Rules_and_Guidelines/

Note: You *must* be a member of the list and have already converted/merged your account with a Yahoo! ID in order to have access to the files area on the list's website. If you haven't already merged your account, go to http://groups.yahoo.com/convwiz and follow their directions. Then go back to the list's main page (http://groups.yahoo.com/group/earlyedition) and make sure you're signed in.

This document is: http://earlydues.usanethosting.com/ieel/netiquette.htm
Last Messed With: August 13, 2004

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#25014

From: Fabric100@...
Date: Tue Apr 1, 2008 2:06 am
Subject: Re: Lidoderm therapy

fabric102

Offline

It's me---Lidoderm Fan Girl. ;) Someone may have already clarified the difference between lidoderm (the skin patches) and IV Lidocaine. If so, forgive me. If not, I'll try here though it is a very fuzzy day.

IV Lidocaine is used for a variety of purposes include heart rhythm problems and immediate post-op pain. As a pain reliever it seems to 'reset' the pain receptors by giving a respite from chronic pain. It is used for a variety of pain, including neuropathic pain. The pain doctor gave a scientific explanation which I will not even attempt to repeat. The IV lidocaine is often mixed in a bag of normal saline or 'glucose water'. It is then administered via an IV over a fairly short period of time--such as 45 minutes to an hour. During that process, the patient is hooked up to a machine that periodically measures blood pressure and continuous monitors the level of oxygen in the blood (pulse ox) through a little gadget that is attached to a finger. This is done in order to monitor the patient and make sure that the lidocaine is not disrupting the heart. Seizures are a rare side effect if the dosage is too high. If a seizure occurs, it usually stops as soon as the IV is stopped. This type of monitoring can take place in a doctor's office--so long as the doctor is familiar with IV lidocaine therapy.

I have also seen straight lidocaine injected rather quickly through an existing IV. This provides a sort of general pain relief for a briefer period of time than the infusion that lasts longer.

IV lidocaine is also given in home health situations. There are even some patients that get it via a subdermal pump.

While getting an IV lidocaine infusion, the patient usually gets sleepy but can be woken up. After the infusion, the sleepiness will often continue and the patient will get 'better' sleep than normal. The pain level is greatly reduced for a period of time from one hour to as long as several weeks. This respite from the worst pain seems to allow oral pain medications to work better. Again, I'm not going to attempt to repeat the scientific theory behind this.

I do know that pain management doctors at the military hospitals caring for amputees are using IV lidocaine regularly for amputees. They said it really helps with 'phantom' pain commonly experienced by amputees. They have found that it is NOT addictive and allows the injured to take much lower doses of narcotics for less time. Thus, there is less risk of addiction to the narcotics.

Enough from Lidoderm Fan Girl! If you are interested in trying IV lidocaine, talk to a pain management specialist. There are plenty of scholarly articles available on the internet so you can even educate yourself. Don't you love the internet.

Stay happy--for me it is time to watch my weekly dose of happy & slightly stupid television.

Anne

Planning your summer road trip? Check out AOL Travel Guides.

#25013

From: Pamela Harrison <ozziespamela@...>
Date: Tue Apr 1, 2008 12:58 am
Subject: Re: Cancer analogy

ozziespamela

Offline

Dr Herbst is still working on it, Karen.
Pamela

----- Original Message ----
From: Karen Krzeminski <kamperk06@...>
T

.Is anyone doing any NEW research on shrinking these things? Jeesh!

Karen K...

OMG, Sweet deal for Yahoo! users/friends: Get A Month of Blockbuster Total Access, No Cost. W00t

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#25012

From: Karen Krzeminski <kamperk06@...>
Date: Mon Mar 31, 2008 11:20 pm
Subject: RE: 1800s 1900s

aqua12062

Offline

Below is a quote from one of those websites when I searched Adiposis Doloroso. Can some doctors really be that dumb?

Karen K.

www.medscape.com/medline/abstract/2300638?src=emed_ckb_ref_0

"The patient is typically an obese, asthenic woman who appears to have a low pain threshold. She has an unusual distribution of fatty tumors, and her complaint of pain in these tumors seems out of proportion to the physical findings. Alcoholism, emotional instability, and depression are common, and narcotic pain medicine is frequently requested. The patient is easily dismissed as a malingerer after a brief examination. However, liposuctioning of the painful fatty tumors appears to be both practical and effective. While adiposis dolorosa is an unusual disease, it is one that plastic surgeons can recognize and treat."

To: Dercums_Disease@yahoogroups.com
From: nomadeclipse@...
Date: Mon, 31 Mar 2008 22:14:59 +0000
Subject: [Dercums_Disease] 1800s 1900s

Hello

If you guys want to read some interesting Dercums observations and
information about Dercums disease go to the book search part of Google
and enter Adiposis Dolorosa. This area is has digitized copys of
medical teaching journals. I found several hundred entries located in
medical books from the 1800s 1900s. I will say some of the information
is rather scary and may disturb some of you. The articles have
autospsy reports of Dercums patients. In several of books they discuss
findings of pituitary gland tumors and wierd growth problems. It seems
to me much of this information was either lost or just forgotten.

Rod

Windows Live Hotmail is giving away Zunes. Enter for your chance to win.

#25011

From: "nomadeclipse" <nomadeclipse@...>
Date: Mon Mar 31, 2008 10:14 pm
Subject: 1800s 1900s

nomadeclipse

Online Now

Hello

If you guys want to read some interesting Dercums observations and
information about Dercums disease go to the book search part of Google
and enter Adiposis Dolorosa. This area is has digitized copys of
medical teaching journals.   I found several hundred entries located in
medical books from the 1800s 1900s.  I will say some of the information
is rather scary and may disturb some of you.  The articles have
autospsy reports of Dercums patients.  In several of books they discuss
findings of pituitary gland tumors and wierd growth problems. It seems
to me much of this information was either lost or just forgotten.


Rod

#25010

From: <waksmf@...>
Date: Mon Mar 31, 2008 10:12 pm
Subject: RE: Wiki slight or just nonsense?

waksmf1984

Offline

Hi Suzann - guess I failed to put in the Wiki Answer links -

http://wiki.answers.com/Q/What_is_dercums_disease

and

http://wiki.answers.com/Q/What_is_a_treatment_for_dercums_disease

The first one is benign, but it was the second that tripped my daughter up.

No harm, no foul, I always say.  Or, in legalese, "What are your damages?"

In Brooklynese - "What's ya damage, eh?"

#25009

From: "nonny46" <nonny46@...>
Date: Mon Mar 31, 2008 9:54 pm
Subject: Lidoderm vs lidocaine?

nonny46

Offline

Is it possible that you meant LIDOCAINE therapy?  I think at least
Dorrit could speak to that issue, and maybe others who have tried it.
I think there have been positive and negative reactions to it.
Personally, I had lidocaine injections and they didn't do a thing.

The IV lidocaine is very dangerous and must be monitored carefully.

Judi

#25008

From: Karen Krzeminski <kamperk06@...>
Date: Mon Mar 31, 2008 9:07 pm
Subject: RE: Cancer analogy

aqua12062

Offline

"DD patients are just like cancer patients, except that
the cancer patients might be "cured" or at least get to die. There's no
end in sight for us.

So, I put it to you, would you feel comfortable relating to someone, when
trying to explain DD, that it is just like cancer but there is no "cure"
and at least cancer patients get to die?

HEY WILL! THAT'S EXACTLY WHAT I SAID WHEN I FOUND OUT I WAS HEADED INTO THIS DERCUM'S. I TOLD MY HUSBAND, SISTER, MOM AND KIDS, "AT LEAST THERE'S A CURE WITH CANCER"...I WAS ALMOST DISAPPOINTED WHEN I FOUND OUT WHAT I WAS IN STORE FOR...WISHING IT WAS A CANCER!!
They all said, "Oh come on now..."
They didn't understand. Maybe I need to reissue that statement a few times a year because it's the truth. I WISH it were cancer.
This is what I have to look forward to the rest of my life. Guess I may as get used to it and hope
for a miracle in my lifetime! LOL..Is anyone doing any NEW research on shrinking these things? Jeesh!

Karen K...

To: Dercums_Disease@yahoogroups.com
From: waksmf@...
Date: Sun, 30 Mar 2008 23:53:25 -0400
Subject: [Dercums_Disease] Cancer analogy

My 19 year old nephew said that it is terrible that people are denied the
things that might really help them, by some nonsense or other, like having
the use of medical marijuana turned into a moral question, while the whole
thing is really about personal autonomy and cash for the synthetic fiber
industry by keeping any type of hemp plants illegal. He said that I should
try to get Marinol and see if that would help me. I explained that it is
typically only prescribed for cancer patients and others with terminal
illnesses. He stated that there is little difference between a cancer
patient and a DD patient. We all get tumors and have renegade cells that
ravage our bodies. We are all subjected to overwhelming medical torture,
and become disabled from the cancer or DD. Except that there is no
treatment for DD, other than to treat the symptoms, such as the pain and
fatigue, while people generally know about cancer and patients might
undergo chemotherapy, excision or radiotherapy and beat the disease. In
that way, he said, DD patients are just like cancer patients, except that
the cancer patients might be "cured" or at least get to die. There's no
end in sight for us.

So, I put it to you, would you feel comfortable relating to someone, when
trying to explain DD, that it is just like cancer but there is no "cure"
and at least cancer patients get to die?

I'm thinking about using the analogy to wake a few people up to the ravages
this disease can throw at us. Goodnight, Will

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#25007

From: Karen Krzeminski <kamperk06@...>
Date: Mon Mar 31, 2008 7:29 pm
Subject: RE: The government

aqua12062

Offline

LOL! All I can say is, "Ditto" to all that Will! LOL! I love ytour educated views. Along with that education I suppose you got a big Gulp of Openmindedness as well. I think we need more of that in our world today. Too many people "shut-off" and think they know the "one and only way" to do things when we should all always listen to all options and weigh. Right?

Thanks Will! You put it so eloquently!

Karen K.

To: Dercums_Disease@yahoogroups.com
From: waksmf@...
Date: Sun, 30 Mar 2008 22:47:23 -0400
Subject: [Dercums_Disease] The government

Karen K. - I hate the Government too.

Me too! The most frightening ten words in the English language, if you
didn't know already, are, "We are from the government, and we're here to
help."

I am a bit of a radical in my political thoughts. Here, I seem rather
calm, and focused, but that is only because I want to concentrate on
aspects of support and DD. Still, I haven't seen anyone from our
government do the right thing since McCulloch v. Maryland in 1819 when that
buffoon Chief Justice John Marshall twisted the Constitution and created
this bogus principal of implied powers. Maryland's contention was that
because the Constitution did not specifically state that the Federal
Government was authorized to charter a bank it could not charter a bank.
Simple, plain reading of the black and white text. No "living document"
nonsense, like they try to teach nowadays. Just a piece of paper with
words on it that Marshall twisted to give his cronies in the federal
government more power and their bank. He screwed things up so bad that we
were thrown into civil war only 42 years later. And, from a constitutional
standpoint, the wrong side won that war....but I digress.

Think I'll try to keep that stuff to myself, and just let lazy
congressional dogs flop where they are. In the end, don't we all just get
mad at the politicians for similar reasons anyway, right? Later, Will

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#25006

From: "Suzann Cheney" <scheney@...>
Date: Mon Mar 31, 2008 5:29 pm
Subject: RE: Wiki slight or just nonsense?

suzanncheney

Offline

Hi Will,

I too always enjoy your sense of humor in the face of this dreaded scourge we all suffer from and just wanted to say thanks for the laughs. In reading this posts, where did you find the treatment for DD was cremation? That is awful, but I don’t see it in any of the sites you pointed out? You’re poor daughter – this must have been a terrible thing for her to hear or read. I’m going to be cremated when my time has come, but I’ll be darned if anyone is going to use it as a form of treatment on me before that time! LOL

Thanks for sharing and the smiles.

Suzann A. Cheney

Administrative Assistant

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel: (315) 268-6738

Fax: (315) 268-7994

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Pamela Harrison
Sent: Monday, March 31, 2008 12:49 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] Wiki slight or just nonsense?

Hi Will,
I think it is funny and will probably use it at my first opportunity. I love to read your posts and I even agree with the first paragraph!
Pamela

----- Original Message ----
From: "waksmf@..." <waksmf@...>
To: Dercums_Disease <Dercums_Disease@yahoogroups.com>
Sent: Sunday, March 30, 2008 10:35:37 PM
Subject: [Dercums_Disease] Wiki slight or just nonsense?

Howdy, me again. I should at first put out a disclaimer that I think the
Wiki sites are chock full of liberal, hand wringing, bleeding heart bias.
Now that I've put that out there, I wanted to put this up on the board.
What do you think, folks? If you go to WikiAnswers, you can find the
following -

What is Dercum's Disease?
Dercums disease, also known as Dercum's Disease or Adiposis Dolorosa, is
characterized by painful fatty tissue or lipomas. The main symptom of the
disease is generalized or local painful fat with certain inflammatory
characteristics. It occurs predominantly in women (only 16% is in men). It
is one of the orphan diseases because it occurs in a small percentage of
the population. A thorough article describing the disease can be found at
http://dercums_ data.tripod. com/brorson. html. References to additional sites
can be found at the Open Directory Project at
http://www.dmoz. org/Health/ Conditions_ and_Diseases/ Skin_Disorders/ Dercum_Disease/

don
don@...

However, you can also find this - "What is a treatment for Dercum's
Disease? cremation."

A bit harsh, no? I mean, if they were asking for a cure, from our
viewpoint, this might be a bit funny and at the same time sad. But my ten
year old daughter came across the cremation remark and pretty much fell
into tears, saying that the person was unbelievably cruel and inhuman to
say such a thing to anyone who suffers from such a horrible disease. I
have a good sense of humor, and tried to explain that maybe they were
trying to be funny, or maybe they were like us and just really angry, etc.
But who knows? Just looking for your thoughts. Party on and be excellent
to each other. Will

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#25005

From: Pamela Harrison <ozziespamela@...>
Date: Mon Mar 31, 2008 4:49 pm
Subject: Re: Wiki slight or just nonsense?

ozziespamela

Offline

Hi Will,
I think it is funny and will probably use it at my first opportunity. I love to read your posts and I even agree with the first paragraph!
Pamela

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#25004

From: Pamela Harrison <ozziespamela@...>
Date: Mon Mar 31, 2008 4:31 pm
Subject: Re: ISO...a REAL Dr. .....

ozziespamela

Offline

Stacy,
Missouri isn't much different. I enjoyed your rant because I echo your thoughts.
Pamela

----- Original Message ----
From: stacpac68 <stacpac68@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, March 31, 2008 12:29:50 AM
Subject: [Dercums_Disease] ISO...a REAL Dr. .....

Hello everyone!
I live in the 7th realm of Hell....also known as Wyoming and I'm in
search of a Doctor as close to me as possible that has the ability to
diagnose this conditon. I need a Doctor that doesn't have a "God
complex", one that doesn't look at me like I have 9 heads, one that
isn't afraid to admit that like the rest of the human population, we
DON'T know it ALL, that I'm NOT a mental patient, that I'm NOT trying
to take their job because I know something they don't about my OWN
body, that has a bedside manner....ANY bedside manner, a Doctor that
LISTENS to their patients, a Doctor that WANTS to HELP people.
I realize this is a tall order, or at least it is here...and I would
like to find one here that has even ONE of these traits. I have yet
to find a doctor in this GOD FORSAKEN pit of Hell... sorry... do I
seem bitter!? Yeah... well, I bit HIM too!!
I just want someone to listen and HELP ME! I really had faith in
Doctors before I became ill, now I'm just completely disgusted,
discouraged and I'm ready to BECOME a mental patient!!! Arrrrgh!!!
I know I'm not the only one who has dealt with this dilemma, so any
advice will be greatly appreciated, and I apologize for the sarcasm,
but it's better than giving up... I refuse to do that.. no matter how
long it takes!!
Also, one other thing, has anyone been to see Dr. Herbst? I would
like to know what that entailed, I'd like to go and see her myself,
but I would like some info on how that works.
Last but not least as if this all isn't bad enough, I have NO
INSURANCE, so as you can imagine, that just makes my world wobble
uncontrollably in the universe!! LOL!!!!

YOU ARE ALL SOOOOOOO AWESOME!!!!

Thanks!!
Stacy

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#25003

From: Pamela Harrison <ozziespamela@...>
Date: Mon Mar 31, 2008 4:08 pm
Subject: Re: Re: Lidoderm therapy

ozziespamela

Offline

I'm with you, Will. I can't believe I didn't know what she was talking about either! Duh!
Pamela

----- Original Message ----
From: "waksmf@..." <waksmf@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, March 31, 2008 7:45:01 AM
Subject: Re: [Dercums_Disease] Re: Lidoderm therapy

Holy cow - I cannot believe how screwed up my mind has become! I used the
patches for about two years following my diagnosis, but stopped because I
couldn't figure out how to wrap myself in one and I couldn't get one as big

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

#25002

From: Pamela Harrison <ozziespamela@...>
Date: Mon Mar 31, 2008 4:06 pm
Subject: Re: Dercums Disease Foundation?

ozziespamela

Offline

Hi Rodney,
I think its a great idea. I have no idea how to go about it, but you don't sound crazy to me!
Pamela

----- Original Message ----
From: nomadeclipse <nomadeclipse@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, March 31, 2008 7:00:25 AM
Subject: [Dercums_Disease] Dercums Disease Foundation?

Hello

How could we as a group form an actual Dercums Foundation? This
foundation could help with research funding,doctor referrals,disabilit y
help, assistance devices such as walkers,wheel chairs, electric
scooters and so on. Perhaps I am just dreaming but many other
foundations were born from the pain and frustration of no help being
available. Do I sound crazy?

Rodney/Nomad

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#25001

From: Pamela Harrison <ozziespamela@...>
Date: Mon Mar 31, 2008 3:51 pm
Subject: Re: Silk Duvets

ozziespamela

Offline

I would love to try a silk duvet, Aubrey, but right now I can't even afford a haircut!
Pamela

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Reply | Forward | Messages in this Topic (4)

#25000

From: "Roxy" <invadedbyaliens1@...>
Date: Mon Mar 31, 2008 3:15 pm
Subject: Re: New Drug Coming out in May - Voltaren Gel

invadedbyaliens

Offline

The gentelman that I called, called me back and said to google to get
the information, the link is http://www.voltarengel.com/index.html

--- In Dercums_Disease@yahoogroups.com, "Roxy" <invadedbyaliens1@...>
wrote:
>
> I called Novartis about spliting the 3 Lidoderm patches up during the
> 24 hours they said to talk to your Dr about it. He went on to mention
> that a new pain relief will be out in May this year called voltaren
gel
> you can use it 3 - 4 times a day. He said there should be information
> up on novartis.com site, but I'm not finding it. There are pills and
> eye drops but not the gel he was talking about.
>

#24999

From: "Roxy" <invadedbyaliens1@...>
Date: Mon Mar 31, 2008 3:18 pm
Subject: Re: Dercums Disease Foundation?

invadedbyaliens

Offline

Your not crazy at all and your brain fog cleared, what a great idea!
Here is a site to tell you how. http://www.cof.org/learn/content.cfm?
ItemNumber=578&navItemNumber=1978

--- In Dercums_Disease@yahoogroups.com, "nomadeclipse"
<nomadeclipse@...> wrote:
>
> Hello
>
> How could we as a group form an actual Dercums Foundation? This
> foundation could help with research funding,doctor
referrals,disability
> help, assistance devices such as walkers,wheel chairs, electric
> scooters and so on. Perhaps I am just dreaming but many other
> foundations were born from the pain and frustration of no help
being
> available.  Do I sound crazy?
>
>
> Rodney/Nomad
>

#24998

From: "Roxy" <invadedbyaliens1@...>
Date: Mon Mar 31, 2008 2:24 pm
Subject: New Drug Coming out in May - Voltaren Gel

invadedbyaliens

Offline

I called Novartis about spliting the 3 Lidoderm patches up during the
24 hours they said to talk to your Dr about it. He went on to mention
that a new pain relief will be out in May this year called voltaren gel
you can use it 3 - 4 times a day. He said there should be information
up on novartis.com site, but I'm not finding it. There are pills and
eye drops but not the gel he was talking about.

#24997

From: "Roxy" <invadedbyaliens1@...>
Date: Mon Mar 31, 2008 1:39 pm
Subject: Re: Lidoderm therapy

invadedbyaliens

Offline

I love my lidoderm patches! And glad for great script coverage. $2.50
for 270 patches. for But you can only wear them for 12 hours and I
can't cover enough area with them. They haven't helped with the
stomach. It's a hard desision sometimes wearing them to get a good
night sleep or wearing them during the day. I should see if I can
wear 1 at night and 2 during the day, if you can split the.

--- In Dercums_Disease@yahoogroups.com, "carole p" <mrs.stikbow@...>
wrote:
>
>
>
> Lidoderm patches are WONDERFUL!  A lot of  DD friends use them.  It
> feels so good to treat the pain where it is located and not take
another
> pill!
>
> If you ever want to find a great place to go to for advice, wisdom,
and
> answers to most of your questions -- look RIGHT HERE  in the
archive of
> messages!
>
> Type a key word in the  ''search box'' and you'll love having such
> amazing help!  For example check out Message #24754 from Anne.  She
> explains all about Lidoderm patches!  (And printing it out helps you
> explain it to your doctor!)
>
> Oh, and Lidocain IV is a treatment you want to leave 'til the very
last!
>
> blessings,
> carolep
>

#24996

From: <waksmf@...>
Date: Mon Mar 31, 2008 1:37 pm
Subject: Anders Disease

waksmf1984

Offline

James Meschter Anders - James Meschter Anders obtained a PhD. at the
University of Pennsylvania, and in 1877 became doctor of medicine. He
worked in Philadelphia as professor of medicine from 1892 to 1918 at the
Medico-Chirurgical College which became the Graduate School of Medicine of
the University of Pennsylvania, with him as professor of medicine and
clinical medicine from 1917. He was active in several hospitals, among
others for several years the Philadelphia Hospital. He wrote a successful
textbook of medicine and amongst other honours was awarded Chevalier of the
Legion of Honour in France in 1923.

Anders Disease seems to be shown a lot on the web as another name for DD,
and I don't know if this is something new or I just don't recall seeing it,
with my brain fogged head. I mean, I forgot I used lidoderm patches for two
years, so who knows?  It seems that there is only a slight difference, with
Dercum's Disease being listed as adiposis dolorosa and Anders Disease is
said to be adiposis tuberosa simplex, which is a condition resembling
adiposis dolorosa, in which the fat occurs in small, nodular masses, which
are sensitive to touch and may be spontaneously painful, on the abdomen or
on the extremities.

There doesn't seem to be much of a difference to my layman's mind, but I
still cannot believe that I am just realizing Anders is associated with
adiposis dolorosa after almost four years of dealing with the scourge since
I learned its name.

Guess we learn something new every day, so I am done for today and will now
shut off that part of my mind.  Whew, that's a relief.  Ignorance for the
rest of the day!  Huzzah!

Reply | Forward | Messages in this Topic (1)

#24995

From: <waksmf@...>
Date: Mon Mar 31, 2008 1:13 pm
Subject: Dipshitzia

waksmf1984

Offline

Tell your wife that I plan on using that one, if I can remember it, that
is!

#24994

From: <waksmf@...>
Date: Mon Mar 31, 2008 1:10 pm
Subject: Got Non-homogenised milk, anyone?

waksmf1984

Offline

Once again, Aubrey, you have me thinking.  I live in a pretty heavy corn
and dairy state, so I think I might be able to track down a ready supplier
of non-homogenized milk, but I cannot recall seeing it any of the local
markets.  I'll try anything short of excision to get these things to calm
down a bit.  I'll let you know if I find it and then we can think about the
results.  Happy Monday back at you.  I guess you folks "across the pond"
really aren't all that bad, even though you put "S"es where your "Z"s
should be and use too many "u"s in your colo(u)rful speech.  Any society
responsible for spawning the Flying Circus and the Canterbury Tales, not to
mention Shakespeare and Marillion, must be alright.  I know, the Northern
Irish, Welsh, Scots and English are retaining their own cultural bases, but
as far as we Americans are concerned, it all just confuses us and we would
rather just lump you all together as British.  Sorry, couldn't resist a
little (very little) Monday morning buffoonery. Party on, dudes - Will

#24993

From: <waksmf@...>
Date: Mon Mar 31, 2008 12:50 pm
Subject: Silk Duvets

waksmf1984

Offline

Aubrey asked, "So is anyone else considering trying them?"

I don't know about this, but I am having second thoughts.  See, silk has
always made me feel, well, for lack of a better word, icky.  It slips and
slides all over the place, and when I touch any type of silk clothing or
simulated silk materials (finely woven nylons or other polyesters) it snags
and sticks on my dried out and cracked heels or scratchy and dry hands.
Maybe I should give it a try, considering the purported benefits.  Still,
it does feel so, well, icky..........Thanks for the info, Aubrey.  Later -
Will

Reply | Forward | Messages in this Topic (4)

#24992

From: <waksmf@...>
Date: Mon Mar 31, 2008 12:45 pm
Subject: Re: Re: Lidoderm therapy

waksmf1984

Offline

Holy cow - I cannot believe how screwed up my mind has become!  I used the
patches for about two years following my diagnosis, but stopped because I
couldn't figure out how to wrap myself in one and I couldn't get one as big
as a bed sheet.  Sorry about that folks.  The patches were very useful,
while I was still working, to keep a buffer between my skin and my attorney
uniform - the dark suit.  I could use up to three per day, and I opted for
the middle of my back and my ribs.  Remember, if you use them, that the
effects are cumulative.  The more you keep the patch on a certain area, I
think, the better they will seem to work on that area.  Also, I had a
12-on/12-off rule, meaning that they were only on from 5:30 AM to 5:30 PM,
then my skin got to rest until the next morning.  Man!  How could I forget
something that I used for two years?  Oh yeah!  One other thing.  When I
stopped using them on my back I developed a bit of dermatitis that quickly
resolved (just a few days).  My dermatologist found it really weird because
people sometimes develop the dermatitis when using the patches, not after.
I am now thinking about going back to them if only to get a bit more relief
in my back, where the beasties are currently running amok on this cold and
damp day.  Hang in there folks, and use your spoons wisely.  Will

#24991

From: "nomadeclipse" <nomadeclipse@...>
Date: Mon Mar 31, 2008 12:00 pm
Subject: Dercums Disease Foundation?

nomadeclipse

Online Now

Hello

How could we as a group form an actual Dercums Foundation? This
foundation could help with research funding,doctor referrals,disability
help, assistance devices such as walkers,wheel chairs, electric
scooters and so on. Perhaps I am just dreaming but many other
foundations were born from the pain and frustration of no help being
available.  Do I sound crazy?


Rodney/Nomad

#24990

From: Rodney Bingham <nomadeclipse@...>
Date: Mon Mar 31, 2008 11:27 am
Subject: Re: Lidoderm therapy?

nomadeclipse

Online Now

Hello

I was reading this laughing out loud. My wife says that I have Dipshitzia.

Nomad

waksmf@... wrote:

I don't think I have ever heard of it......but that doesn't say much.
Sometimes I know I have CRS brought on by the DD.. Of course, if you
didn't know, CRS is Can't Remember Sh-t. So folks, lidoderm, do tell.

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#24989

From: Rodney Bingham <nomadeclipse@...>
Date: Mon Mar 31, 2008 11:12 am
Subject: Re: Non-homogenised milk anyone

nomadeclipse

Online Now

Hello All

I also believe that high fructose corn syrup causes our lesions to swell also!

Nomad

aubtsturgeon <aubtsturgeon@...> wrote:

Good morning all and a happy Monday to everyone.

I mentioned this several weeks ago how homogenised milk looks like it aggravates DD (for me anyway), however the only way to be sure is if others try non-homogenised milk.
Usually this means full skimmed milk unless you look fully at the label, as it must mention if its homogenised (in the UK anyway).

So, is there any brave person/s willing to try skimmed milk?
Or are there people who still use milk and have not checked if its homogenised?

This information can really be of use to us all and I would think also to Dr Herbst.
However to get a reference it needs others to try it.
So who is up for the challenge

Cheers
Aubs

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#24988

From: yankeestovall@...
Date: Mon Mar 31, 2008 4:16 am
Subject: Re: Heart problems, diabetes

brunerjoan

Offline

Judi, I am sorry you have had this happen. But I am glad it has been found now. I am praying for the best for you, Joan

Create a Home Theater Like the Pros. Watch the video on AOL Home.

#24987

From: yankeestovall@...
Date: Mon Mar 31, 2008 4:02 am
Subject: Re: ISO...a REAL Dr. .....

brunerjoan

Offline

Hi Stacy, I just sent you an email. Anyone can call and make an appointment with Dr.Herbst in San Diego. When calling about an appointment is the time to inquire regarding the cost as it may have changed or be different for different people. I recall that a payment under $100.00 was due the day of appointment and the rest was billed. We are still in a fight with our insurance company over the that. All travel and lodging arrangements are made by the patient, Joan

Create a Home Theater Like the Pros. Watch the video on AOL Home.

#24986

From: "aubtsturgeon" <aubtsturgeon@...>
Date: Mon Mar 31, 2008 7:29 am
Subject: Re: Cancer analogy

aubtsturgeon

Offline