Dercums_Disease : Messages : 19521-19550 of 29309

Global Health Network

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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

Reply | Forward | Messages in this Topic (51)

#19549

From: Vickie Klaiber <vickie_klaiber@...>
Date: Fri Dec 1, 2006 5:59 am
Subject: Barbara and Suzanne & Drs. and article

vickie_klaiber

Offline

Just read your post and was wondering if you know
where I could find this article at, so that I can
read it, If Suzanne doesn't get her computer
files back up and find them.  I would appreciate
it, from either one of you as soon as possible
and the Dr. Names and where they are located if
possible.  I have been diagnosed with DD and am
going to a new Rhematologist this coming week.
Mine was about a 2 hour drive one way and I have
found one that is abut 1/2 hour away, that Dr's
Lupus, don't know if he knows anything about DD
yet.  I have the rash on my face also, some on my
back and a few spots on my arms when I get in the
sun.  I did have a biopsy done and it came back
as Discoid Lupus with something else deep under,
don't remember.  They wanted to check me or
Systematic Lupus, but haven't done that yet.
Have had 4 weeks of trouble with my right leg,
ankle and foot.  After 2 weeks, they put a
walking brace on me, took another week for a cat
scan, and another week for a MRI which was done
today.  Looking for a fracture, but what ever
this is has worked all the way up my leg and into
my hip.  So far all they have found is soft
tissue edema with more in the foot than ankle.  I
have fell 4 times in the last month, because of
leg weakness and Menieres Disease another
autoimmune.  It took me 5 years and being on
Antivert for dizziness, then I found a good ENT
in Lancaster, that diagnosed me the first time,
and has it pretty much under control.
I get tired of the Dr.'s too.  Seems like that is
all I do is see the doctor and come home not
knowing no more than when I went.  Like feeling
you've run a mile and look down and you are still
standing in the same place.  Don't know what to
think on this leg deal though, they say more soft
tissue edema in foot than ankle, but it is my
ankle that hurts like a toothache all the time.
Tried to get my Dr. to do a complete leg MRI up
to my hip, but they will only check one part at a
time.  Never heard of the like, Just more money
on their part.  Sorry this got so long.  Just was
going to write and ask you or Suzanne about the
Dr. and report.
One more question, Has any of you heard of P
FFAB,(Pre Fever ??????? (forgot that word)
Adenoid Brain) another autoimmune, they say.
Have searched the Internet for this and cannot
find anything.  The Dr at Philadelphia Children's
Hospital found this  was what is wrong with one
of my twin granddaughter's who is only 4.  Sorry
so long just can't sleep tonight.    Vickie



________________________________________________________________________________\
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Everyone is raving about the all-new Yahoo! Mail beta.
http://new.mail.yahoo.com

#19548

From: "jlkep" <jlkep@...>
Date: Fri Dec 1, 2006 4:12 am
Subject: new to site, need soem help, please

jlkep

Offline

I think I may have Dercum's and have been reading everything I can
get to- I research every new term I come across and this is very
time consuming, as you all probably know. Can you please explain
what FM is, and vitigo-it would save me some precious time . Also, I
am 35 years old, have had one baby, and only about 10 pounds
overweight. I am not the best at keeping in shape- eat too many
carbs, not enough water, too much caffeine, not enough exercise. I
feel like I am on the track to gaining a great deal of weight - it
seems to just be adding on- and am very interested in ideas for how
to prevent this. I need to know what to ask the doctors-what tests -
scans, etc. I have lumps EVERY WHERE and I want to be sure they are
not internal, not invading organs, etc I feel like my heart
flutters, my digestion isn't the same, and I also feel like my
memory is going- what do I do? Why is this causing memory probs?
There is now so much info on this site an dthe other sites that I
need some help weeding it all out. I felt alone before, and I am
glad not to feel that, but I now very overwhelmed. Can someone please
sum this up for me? Thanks

Reply | Forward | Messages in this Topic (3)

#19547

From: Pamela Harrison <ozziespamela@...>
Date: Fri Dec 1, 2006 3:29 am
Subject: Re: Electric Blanket

ozziespamela

Offline

Hi Heather,
I just wanted to caution you about laying on top of an
electric blanket. If you fall asleep you could get
some severe burns. Most blankets come with a warning
about that. I don't know exactly how that happens, but
the blanket can overheat in areas where anything is
compressing the wires. Be careful!!
Pamela
--- heather@... wrote:

> hi there,
>
> I just recently discovered electic blankets and it
> is really helping me with the pain. I turn the
> blanket on high, lay on top of it and wrap it around
> my body so it acts like a heating pad only much
> bigger (my lipomas are in my lower back). I've heard
> a lot of talk about hot baths and those help me too
> but this is even better. Also, I thought it might
> help those that can't take too much heat because it
> is more subtle than a hot bath and has low settings
> too. It has been a bit like sinking into heaven for
> me lately.
>
> hope this helps someone,
> Heather
>
>
>
>




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#19546

From: heather@...
Date: Thu Nov 30, 2006 1:37 pm
Subject: Electric Blanket

heatherwolf1234

Offline

hi there,

I just recently discovered electic blankets and it is really helping me with the pain. I turn the blanket on high, lay on top of it and wrap it around my body so it acts like a heating pad only much bigger (my lipomas are in my lower back). I've heard a lot of talk about hot baths and those help me too but this is even better. Also, I thought it might help those that can't take too much heat because it is more subtle than a hot bath and has low settings too. It has been a bit like sinking into heaven for me lately.

hope this helps someone,
Heather

#19545

From: "jlkep" <jlkep@...>
Date: Fri Dec 1, 2006 2:29 am
Subject: think I have DD.what isFM, vitiligo,weight gain, invasion of organs? what tests?

jlkep

Offline

-I think I may have Dercum's and have been reading everything I can
get to- I research every new term I come across and this is very
time consuming, as you all probably know. Can you please explain
what FM is, and vitigo-it would save me some precious time . Also, I
am 35 years old, have had one baby, and only about 10 pounds
overweight. I am not the best at keeping in shape- eat too many
carbs, not enough water, too much caffeine, not enough exercise. I
feel like I am on the track to gaining a great deal of weight - it
seems to just be adding on- and am very interested in ideas for how
to prevent this. I need to know what to ask the doctors-what tests -
scans, etc. I have lumps EVERY WHERE and I want to be sure they are
not internal, not invading organs, etc I feel like my heart
flutters, my digestion isn't the same, and I also feel like my
memory is going- what do I do? Why is this causing memory probs?
There is now so much info on this site an dthe other sites that I
need some help weeding it all out. I felt alone before, and I am
glad not to feel that, but I now very overwhelmed.Can someone please
sum this up for me? Thanks
-- In Dercums_Disease@yahoogroups.com, "thisbeme06" <my3angels@...>
wrote:
>
>
> Hello ..
>             I just wanted to say something that has been bothering
> me..I have posted quite a few messages on here..but no one seems
to
> want to reply to me..Have you all known each other for a long
time? I
> am wondering if maybe I just dont fit in? From Katrina
>
>
>
> --- In Dercums_Disease@yahoogroups.com, "Karen Herbst" <kaherbst@>
> wrote:
> >
> > Cynthia:  Have you ever had a biopsy of that area?
> >
> > On 11/6/06, Cynthia <c_prentice2003@> wrote:
> > >
> > >   Hi,
> > >
> > > I have a semi-permanent rash which worsens when I am tired or
> > > stressed across the centre of my face which is typical for
Lupus.
> I
> > > sometimes use a cortisone cream when it gets really bad - but
> very,
> > > very rarely.
> > >
> > > Don't know what it is..... neither do the docs....
> > >
> > > Cynthia
> > > --- In Dercums_Disease@yahoogroups.com <Dercums_Disease%
> 40yahoogroups.com>,
> > > "thisbeme06" <my3angels@>
> > > wrote:
> > > >
> > > > Hello Cynthia!!
> > > > This is Katrina..I too have a terrible rash on my
> > > > face..right now in fact!!,,its been there for 3 weeks now..my
> > > doctor
> > > > does nothing about it..its painful and looks terrible..I
seem to
> > > get
> > > > it when I am really feeling unwell and in a lot of
pain..What do
> > > you
> > > > do for your rash? Mine always seems to end up in the exact
same
> > > > spot..down the side of my mouth chin and nose..I was tested
> > > negative
> > > > for lupus...Strange isnt it? Wonder if it is related to
> Dercums??
> > > Take
> > > > care of yourself...
> > > >
> > > > --- In Dercums_Disease@yahoogroups.com<Dercums_Disease%
> 40yahoogroups.com>,
> > > "Cynthia"
> > > > <c_prentice2003@> wrote:
> > > > >
> > > > > Hi everyone,ou
> > > > >
> > > > > I think a lot of us have had different signs of auto-immune
> > > ilness
> > > > > in the past - or present! And either they come and go - or
> they
> > > > have
> > > > > gone ignored by the medical system.
> > > > >
> > > > > I believe that Karen thinks tha DD is a form of auto-immune
> > > illness
> > > > > in one way or another although nothing has been proven
yet.
> You
> > > > have
> > > > > to have specific auto-antibodies to qualify a disease as
an
> auto-
> > > > > immune disease - but first of all you have to identify
with
> each
> > > > > subject exactly which antibody is causing the disease!!
> > > > >
> > > > > About 6/7 years ago - after my hystectomy and my six
months of
> > > hell
> > > > > with HRT, I was fully investigated and found to have very
> > > specific
> > > > > antibodies for Systemic Lupus....... I took the treatment
for
> 5
> > > > > years and felt better on it - except for the cortisone,
but I
> am
> > > > > now - un-diagnosed by other doctors who say I do not have
> > > Lupus !!!
> > > > > So what is this permanent malar rash I have all the time
> then??
> > > Is
> > > > > this a part of Lupus or do others have a facial rash with
DD??
> > > > >
> > > > > I would be interested in knowing whether anybody else has
had
> > > these
> > > > > types of problems.
> > > > >
> > > > > Cynthia--- In
Dercums_Disease@yahoogroups.com<Dercums_Disease%
> 40yahoogroups.com>,
> > > "Caryn"
> > > > > <caryn.healey@> wrote:
> > > > > >
> > > > > > I don't think I should do the tanning bed thing. I have
> > > vitiligo.
> > > > > I
> > > > > > stay out of the sun at all costs. I even wear a stupid
getup
> > > just
> > > > > to
> > > > > > ride the riding lawn mover, including gloves, long
sleeves
> and
> > > a
> > > > > hat. I
> > > > > > have it on my face and hands, in my armpits, inner thigh
> etc.
> > > It
> > > > > is not
> > > > > > spreading yet. But who knows why it does anyway. I am
the
> only
> > > > > fair
> > > > > > anglo saxon type person my doctor has EVER seen with
> vitiligo.
> > > > > Came on
> > > > > > about 9 mons to a year before I put 2 and 2 together
with
> the
> > > FM
> > > > > and DD
> > > > > > stuff. I know it is a systemic auto immune type thing.
So I
> > > > figure
> > > > > it
> > > > > > is tip of the iceberg type of symptom. I soooooo don't
want
> to
> > > > > know
> > > > > > what is under that water. You know?
> > > > > >
> > > > > > Caryn
> > > > > >
> > > > >
> > > >
> > >
> > >
> > >
> >
>

Reply | Forward | Messages in this Topic (45)

#19544

From: barbara croker <lyonziefiddler@...>
Date: Fri Dec 1, 2006 1:37 am
Subject: Re: Re: Suzann Cheney

lyonziefiddler

Offline

It is Dr.Campten, Dr Makin , Dr.Mia mCcullin who did the article , my Dr. Is Dr. Mankin , he DX me, and sent me to MIA, they did they all did the article together,

hey Suzann, I have not been ignoring you in fact the opposite , I think about you and Shawn , and Judi and all you , every day ,

I received your message when I came bac, and I am goin gto call you , I just have to sit and do it ... I will when I came bac I ran in to gobble gobble day and then I slept for a couple of days , and I had to have a few teast , anyway , I will ring you in the am............ after I drop my niece off...ok...

Barb

Suzann Cheney <scheney@...> wrote:

Hi Vickie,

I'm not ignoring your post, but my brain has taken a nose dive the last day or two and I cannot for the life of me recall the doctor's name you speak of. My computer at work crashed and we've been two days trying to capture what we can from the hard drive! Needless to say stress levels at work have been at an all time high for me the last two days, and I know that's why my brain will not kick into gear. I still have yet to have my contacts moved over to the temporary machine, hopefully today and I know I have all her information in there that I will send to you personally. Keep in mind that the term treats means she only diagnosis, advises, offers pain meds and referralls to other specialists! She did not recommend getting to many tumors removed as her thoughts were that laser surgery was moving quickly in development of ridding people of other forms of things and therefore felt those of us with Dercum's should sit tight as she felt this would be a less evasive way to rid ourselves of the most painful ones without major scars. I don't know that I buy that one right now!

Anyway, look for another message shortly with her contact info - just as soon as they are able to recover that information from my crashed machine ok.

By the way this doctor is really, really, nice and as for the document she wrote - Dr. Herbst has a copy (she sent me one a long time ago), but again until all my files are restored, (or whatever they can restore) I do not have a copy at this time.

Vickie Klaiber <vickie_klaiber@yahoo.com>
Sent by: Dercums_Disease@yahoogroups.com
11/29/2006 12:27 PM

Please respond to
Dercums_Disease@yahoogroups.com

To
Dercums_Disease@yahoogroups.com

cc

Subject
[Dercums_Disease] Re: Suzann Cheney

Was going through some of the post and was
reading yours about a Dermatologist in Boston,
MA. who has treated many DD patients and had
wrote a team paper on Dercums that has been
published. Would you mind sharing with me the
name of the dr. and where I might find the
Dercums paper that he has published? Can it be
found on the net or where. I am getting ready to
start over with a new Rhematologists and this
would be helpful to me, if he hasn't heard of DD.
I thought I might be able to do some research on
what this Dr. has published and will have even
more information. (If I can remember when I get
there) I have a lot of trouble with this brain
fog, and when I get in the doctor's office I lose
all memory, even with my notes I make. Thank You
for any information you can give me. Vickie
--- Suzann Cheney <scheney@clarkson.edu> wrote:

> Hi Barb,
>
> Thought I'd share my experience with two
> doctors - Both Endochrinologists
> who refused to see me based on a referral from
> my doctors stating that I
> possibly had Dercums' Disease. Both came back
> to my doctor indicating
> they had never heard of the disease and that it
> was out of the scope of
> their practice. So we moved on to a
> Rheumotologist at the same hospital,
> who we had learned at least knew something of
> Dercum's. However, this
> time when we called to schedule we wrote up the
> referral to indicate that
> I was having problems with muscles, etc. and
> wanted to rule out Rheumatory
> type illnesses and that we thought I might have
> Dercum's Disease. I got a
> call from that doctor saying she did not want
> to see me because even
> though she had heard of DD, there were no
> treatments and she didn't think
> she wanted to waste my time (more likely she
> didn't want me wasting her
> time). I simply told her that yes we thought I
> did have DD but that since
> it is a clinical evaluation, that we had to
> rule out other types of
> rheumatory illnesses before we could get a
> diagnosis of DD and she agreed
> to see me. Once there that is precisely what
> we did - I was checked for
> all the standard Rhematory illnesses, and then
> we talked about why we
> thought I had DD and she listened and took the
> papers I brought with me
> about DD, then she examined my tumors. In the
> end after all blood tests
> etc. were back, she agreed that she thought I
> had DD and then offered to
> help me find the other necessary doctors I
> needed and got me into the
> Endochrinologist that refused me. She said she
> understood that this was a
> tag team effort to really get a DD diagnosis
> and Endchrinologists were a
> big part of that. So, based on her referral I
> went 2 months later back
> and saw that other Doctor. We did not hit it
> off well, but in the end of
> the exam she too agreed I had DD, then I
> travled to Dermatologist in
> Boston, MA, who had treated many DD patients
> and has actually team written
> a paper on DD that has bee published. She knew
> on site from seeing me
> that I had DD and confirmed my diganosis as
> well. I still have to find a
> Neurologist or Neursurgeon to complete the team
> of doctors I need. But we
> found we got in easier by saying that we needed
> them to rule out the
> possible illnesses within their profession that
> could be causing my
> symptoms and the fact that DD might be a
> possibility. Once I was at each
> doctor I presented the finding of others to
> that point and provided
> documents on DD and talking to them became much
> easier.
>
> So anyway that's what worked for me - I hope it
> might help you. Best
> wishes.
>
>
>
>
>
> "Barb" <barbrrr@yahoo.com>
> Sent by: Dercums_Disease@yahoogroups.com
> 11/12/2006 12:13 PM
> Please respond to
> Dercums_Disease@yahoogroups.com
>
>
> To
> Dercums_Disease@yahoogroups.com
> cc
>
> Subject
> [Dercums_Disease] Looking for a doctor
>
>
>
>
>
>
> Hi All,
> I was just wondering, when you make an
> appointment with a new doctor,
> do you tell them up front that you believe you
> have dercums or do you
> give them the symptoms and wait for them to
> tell you to loose wieght
> and you will feel better before you present
> them with the info on
> dercums.
> The reason I am asking is because I just had an
> experience with the
> University of Chicago physicans group. My
> doctor flat out said she
> had never heard of it and I needed to go to the
> university of chicago
> and ask for an endocrine evaluation...which I
> did, I had to start
> with with an app. with a nurse practioner
> there, I gave her all the
> info up front and she wrote a referral for the
> endocrine
> physicans...these doctors will not see you
> without a referral from
> another medical professional. So I called to
> make the appointment and
> the receptionist said I never heard of
> that..hold please...she came
> back and said she ask 2 doctors and they never
> heard of it. She ask
> for a place to verify that the disease existed
> and I gave her the
> dercums hope website and ask her...If they have
> not heard of the
> disease does that mean you cannot give me an
> appointment...and she
> said "thats right".....This was a week ago and
> I am still
> flabbergasted.....she said she would look it up
> and call me
> back...she has still not called. I have a call
> into the nurse
> practioner that referred me and still have not
> heard from her...but I
> think she may have been on vacation last
> week...Anyway one of my co
> workers that used to work for as a receptionist
> for a doctor says I
> should never tell them about dercums to start
> with, but try to guide
> them to come up with it on their own...which I
> feel is impossible to
> start with. How do you all handle it?
> Barb
>
>
>

__________________________________________________________
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Reply | Forward | Messages in this Topic (16)

#19543

From: "irakel2" <irakel2@...>
Date: Fri Dec 1, 2006 12:10 am
Subject: Cherry angiomas

irakel2

Offline

I have cherry angiomas also. I had a few in my twenties on my left
thigh. I am 66 now and have them on my thighs, upper arms, around my
waist. I have a lipoma the size of a tennis ball right under my right
ribs with cherry angiomas all over it.

Donna

#19542

From: susan caisse <plasmakeg@...>
Date: Thu Nov 30, 2006 7:01 pm
Subject: Re: Re: Liposuction and Tummy Tuck?

plasmakeg

Online Now

Hi There,

My lipomas are in the area where this is very little body fat on the ribcage those little monsters can

pop up anywhere.

Anytime you have a major surgery there is risk. I would love to have a tummy tuck after 11 abdominal surgerys for cyst removals my stomach is disgusting.

I know if I were to attempt such a surgery at this time with all the side symptoms of dercums it would the longest healing process I would ever go thru as much as I would like to I know it would be

very difficult to heal

Good Luck with whatever you choose to do and remember your health and well being come first.

Happy Holidays to all@@

Susan

----- Original Message ----
From: Cynthia <c_prentice2003@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, November 30, 2006 10:55:12 AM
Subject: [Dercums_Disease] Re: Liposuction and Tummy Tuck?

Hi there,
Just to add my tuppence worth....

I have had a tummy tuck - years before I knew why I had this excess
fat and way before I ever thought I would have two more children and
put on twice as much weight as ever before.....

Looking back - (I was in my 20s) I was happy to have had it done,
despite the 6 weeks with an open wound which would not heal on my
abdomen and the horrific scar it leaves....

Knowing what I know today about having Dercums, I wouold defoinitely
hesitate and before even considering it I would lose as much weight
as possible - if possible - because as everyone else has siad -
tumours have nothing to do with fat placement per se....... those
darn things just pop up where ever they feel like it. I would
hesitate today to undertake such a majot operation knowing how
difficult it is to heal afterwards.. ...

Cynthia

--- In Dercums_Disease@ yahoogroups. com, "nonny46" <nonny46@... >
wrote:
>
> Hi Shelly,
>
> since you asked for opinions, I'll give mine, though I rarely do
> that! It sounds to me like this doctor is not looking at the
entire
> picture of the disease. It is not just the lipomas, it is much
more
> than that. As Maud says, you can have lipomas where there isn't
> fat, and I can attest to that.
>
> As far as not gaining weight is concerned, I think that is just
not
> possible. We are all fighting that battle, and I don't think
> there's any way to stop some weight gain. Along with the
scarring,
> possible skin death, and all his other warnings, I would
personally
> not go for that. Besides, it wouldn't stop the lipomas from
growing
> elsewhere!
>
> It is a personal decision you have to make, and I hope that
whatever
> you decide, it is the best for you,
>
> Judi
>

Want to start your own business? Learn how on Yahoo! Small Business.

#19541

From: "Cynthia" <c_prentice2003@...>
Date: Thu Nov 30, 2006 3:55 pm
Subject: Re: Liposuction and Tummy Tuck?

c_prentice2003

Offline

Hi there,
Just to add my tuppence worth....

I have had a tummy tuck - years before I knew why I had this excess
fat and way before I ever thought I would have two more children and
put on twice as much weight as ever before.....

Looking back - (I was in my 20s) I was happy to have had it done,
despite the 6 weeks with an open wound which would not heal on my
abdomen and the horrific scar it leaves....

Knowing what I know today about having Dercums, I wouold defoinitely
hesitate and before even considering it I would lose as much weight
as possible - if possible - because as everyone else has siad -
tumours have nothing to do with fat placement per se....... those
darn things just pop up where ever they feel like it. I would
hesitate today to undertake such a majot operation knowing how
difficult it is to heal afterwards.....

Cynthia

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@...>
wrote:
>
> Hi Shelly,
>
> since you asked for opinions, I'll give mine, though I rarely do
> that!  It sounds to me like this doctor is not looking at the
entire
> picture of the disease.  It is not just the lipomas, it is much
more
> than that.  As Maud says, you can have lipomas where there isn't
> fat, and I can attest to that.
>
> As far as not gaining weight is concerned, I think that is just
not
> possible.  We are all fighting that battle, and I don't think
> there's any way to stop some weight gain.  Along with the
scarring,
> possible skin death, and all his other warnings, I would
personally
> not go for that.  Besides, it wouldn't stop the lipomas from
growing
> elsewhere!
>
> It is a personal decision you have to make, and I hope that
whatever
> you decide, it is the best for you,
>
> Judi
>

#19540

From: "nonny46" <nonny46@...>
Date: Thu Nov 30, 2006 2:38 pm
Subject: Re: Liposuction and Tummy Tuck?

nonny46

Offline

Hi Shelly,

since you asked for opinions, I'll give mine, though I rarely do
that!  It sounds to me like this doctor is not looking at the entire
picture of the disease.  It is not just the lipomas, it is much more
than that.  As Maud says, you can have lipomas where there isn't
fat, and I can attest to that.

As far as not gaining weight is concerned, I think that is just not
possible.  We are all fighting that battle, and I don't think
there's any way to stop some weight gain.  Along with the scarring,
possible skin death, and all his other warnings, I would personally
not go for that.  Besides, it wouldn't stop the lipomas from growing
elsewhere!

It is a personal decision you have to make, and I hope that whatever
you decide, it is the best for you,

Judi

#19539

From: Suzann Cheney <scheney@...>
Date: Thu Nov 30, 2006 1:21 pm
Subject: Re: Re: Suzann Cheney

suzanncheney

Offline

Hi Vickie,

I'm not ignoring your post, but my brain has taken a nose dive the last day or two and I cannot for the life of me recall the doctor's name you speak of. My computer at work crashed and we've been two days trying to capture what we can from the hard drive! Needless to say stress levels at work have been at an all time high for me the last two days, and I know that's why my brain will not kick into gear. I still have yet to have my contacts moved over to the temporary machine, hopefully today and I know I have all her information in there that I will send to you personally. Keep in mind that the term treats means she only diagnosis, advises, offers pain meds and referralls to other specialists! She did not recommend getting to many tumors removed as her thoughts were that laser surgery was moving quickly in development of ridding people of other forms of things and therefore felt those of us with Dercum's should sit tight as she felt this would be a less evasive way to rid ourselves of the most painful ones without major scars. I don't know that I buy that one right now!

Anyway, look for another message shortly with her contact info - just as soon as they are able to recover that information from my crashed machine ok.

By the way this doctor is really, really, nice and as for the document she wrote - Dr. Herbst has a copy (she sent me one a long time ago), but again until all my files are restored, (or whatever they can restore) I do not have a copy at this time.

Vickie Klaiber <vickie_klaiber@...>
Sent by: Dercums_Disease@yahoogroups.com

11/29/2006 12:27 PM

Please respond to
Dercums_Disease@yahoogroups.com

To	Dercums_Disease@yahoogroups.com
cc
Subject	[Dercums_Disease] Re: Suzann Cheney

Was going through some of the post and was
reading yours about a Dermatologist in Boston,
MA. who has treated many DD patients and had
wrote a team paper on Dercums that has been
published. Would you mind sharing with me the
name of the dr. and where I might find the
Dercums paper that he has published? Can it be
found on the net or where. I am getting ready to
start over with a new Rhematologists and this
would be helpful to me, if he hasn't heard of DD.
I thought I might be able to do some research on
what this Dr. has published and will have even
more information. (If I can remember when I get
there) I have a lot of trouble with this brain
fog, and when I get in the doctor's office I lose
all memory, even with my notes I make. Thank You
for any information you can give me. Vickie
--- Suzann Cheney <scheney@...> wrote:

> Hi Barb,
>
> Thought I'd share my experience with two
> doctors - Both Endochrinologists
> who refused to see me based on a referral from
> my doctors stating that I
> possibly had Dercums' Disease. Both came back
> to my doctor indicating
> they had never heard of the disease and that it
> was out of the scope of
> their practice. So we moved on to a
> Rheumotologist at the same hospital,
> who we had learned at least knew something of
> Dercum's. However, this
> time when we called to schedule we wrote up the
> referral to indicate that
> I was having problems with muscles, etc. and
> wanted to rule out Rheumatory
> type illnesses and that we thought I might have
> Dercum's Disease. I got a
> call from that doctor saying she did not want
> to see me because even
> though she had heard of DD, there were no
> treatments and she didn't think
> she wanted to waste my time (more likely she
> didn't want me wasting her
> time). I simply told her that yes we thought I
> did have DD but that since
> it is a clinical evaluation, that we had to
> rule out other types of
> rheumatory illnesses before we could get a
> diagnosis of DD and she agreed
> to see me. Once there that is precisely what
> we did - I was checked for
> all the standard Rhematory illnesses, and then
> we talked about why we
> thought I had DD and she listened and took the
> papers I brought with me
> about DD, then she examined my tumors. In the
> end after all blood tests
> etc. were back, she agreed that she thought I
> had DD and then offered to
> help me find the other necessary doctors I
> needed and got me into the
> Endochrinologist that refused me. She said she
> understood that this was a
> tag team effort to really get a DD diagnosis
> and Endchrinologists were a
> big part of that. So, based on her referral I
> went 2 months later back
> and saw that other Doctor. We did not hit it
> off well, but in the end of
> the exam she too agreed I had DD, then I
> travled to Dermatologist in
> Boston, MA, who had treated many DD patients
> and has actually team written
> a paper on DD that has bee published. She knew
> on site from seeing me
> that I had DD and confirmed my diganosis as
> well. I still have to find a
> Neurologist or Neursurgeon to complete the team
> of doctors I need. But we
> found we got in easier by saying that we needed
> them to rule out the
> possible illnesses within their profession that
> could be causing my
> symptoms and the fact that DD might be a
> possibility. Once I was at each
> doctor I presented the finding of others to
> that point and provided
> documents on DD and talking to them became much
> easier.
>
> So anyway that's what worked for me - I hope it
> might help you. Best
> wishes.
>
>
>
>
>
> "Barb" <barbrrr@...>
> Sent by: Dercums_Disease@yahoogroups.com
> 11/12/2006 12:13 PM
> Please respond to
> Dercums_Disease@yahoogroups.com
>
>
> To
> Dercums_Disease@yahoogroups.com
> cc
>
> Subject
> [Dercums_Disease] Looking for a doctor
>
>
>
>
>
>
> Hi All,
> I was just wondering, when you make an
> appointment with a new doctor,
> do you tell them up front that you believe you
> have dercums or do you
> give them the symptoms and wait for them to
> tell you to loose wieght
> and you will feel better before you present
> them with the info on
> dercums.
> The reason I am asking is because I just had an
> experience with the
> University of Chicago physicans group. My
> doctor flat out said she
> had never heard of it and I needed to go to the
> university of chicago
> and ask for an endocrine evaluation...which I
> did, I had to start
> with with an app. with a nurse practioner
> there, I gave her all the
> info up front and she wrote a referral for the
> endocrine
> physicans...these doctors will not see you
> without a referral from
> another medical professional. So I called to
> make the appointment and
> the receptionist said I never heard of
> that..hold please...she came
> back and said she ask 2 doctors and they never
> heard of it. She ask
> for a place to verify that the disease existed
> and I gave her the
> dercums hope website and ask her...If they have
> not heard of the
> disease does that mean you cannot give me an
> appointment...and she
> said "thats right".....This was a week ago and
> I am still
> flabbergasted.....she said she would look it up
> and call me
> back...she has still not called. I have a call
> into the nurse
> practioner that referred me and still have not
> heard from her...but I
> think she may have been on vacation last
> week...Anyway one of my co
> workers that used to work for as a receptionist
> for a doctor says I
> should never tell them about dercums to start
> with, but try to guide
> them to come up with it on their own...which I
> feel is impossible to
> start with. How do you all handle it?
> Barb
>
>
>

__________________________________________________________
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#19538

From: maud hayes <maudhayes@...>
Date: Thu Nov 30, 2006 11:40 am
Subject: Re: activity

maudhayes

Offline

Just an idea for those that say they cannot ski, sled etc. anymore for fear of injury or inability....for those that can still walk unhindered...if you are in an area with snow - I have found snowshoeing to be a good exercise - great for hips/butt/thighs and you can do it at your own speed even in the local park or your backyard.....you have poles to give you stability. Personally I still cross country ski but when I was in the States last year picked up a pair of these snowshoes and it is a good workout without the fear of falling etc. Just a thought....

maud

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#19537

From: maud hayes <maudhayes@...>
Date: Thu Nov 30, 2006 10:14 am
Subject: Re: Liposuction and Tummy Tuck?

maudhayes

Offline

There are a lot of it's. They can never LIPO all of the fat out and I have aliens for example on my rib cage where there is literally not fat at all - so personally think he might be thinking you only get aliens where there is fat and that is not the case.....I have exceedingly little fat on my lower arms and I have aliens near the wrist - so it might be wishful thinking to advise that lipo would get rid of the problem.

maud

badbeanie2006 <badbeanie@...> wrote:

Hi there everyone, been a member for quite some time but I very
rarely post, mainly a lurker!

Don't you just hate people like me??

Anyway just thought I would post and get some opinions, either bad or
good on what my consultant has decided to do.

Earlier this year I had my 3rd operation on my stomach to remove
another 10 lipoma's as I say this is the 3rd time in 2 years, and
sadly they have come back again.
The pain isn't too bad right now but I know it's going to get worse,
as always! So off I went to the doc's to discuss what I need to do
and he again advised speaking to the consultant surgeon that operated
earlier this year.
Now I have to say he is a great guy, easy to talk too and knows a
little about Dercums (which always helps) he had a look and feel
round my stomach area and sat down with me to discuss what he feels
would be the best way forward.

A tummy tuck and lipsuction were his thoughts!!!
Liposuction to remove all fat from around my abdomen and then a tummy
tuck to get rid of the excess skin, he feels that by removing the fat
it would stop any further lumps forming.
A few concerns he has about the op, the amount of scaring I have due
to the previous operations, mainly because of the lack of blood that
will be flowing to that area, he said there is a chance of the skin
dying off possibly.
Secondly the chance of infection and then the chance of having
children will possibly be taken away also. He said this will be
because of tightening the skin, no weight gain or loss....I would
need to maintain a steady weight from there on in.

I have been given time to think this over and would like you all to
advise me on your thoughts??

I guess one bonus would be my size....he want's me to try and loose
some weight in the next 4-6 weeks, easier said than done, eh?? But he
said he reckon's I would go down to a size 8-10(UK) after the op (not
been that size since I was in my 20's!!!!!)

Take care
Shelly x

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#19536

From: "badbeanie2006" <badbeanie@...>
Date: Wed Nov 29, 2006 5:25 pm
Subject: Liposuction and Tummy Tuck?

badbeanie2006

Offline

Hi there everyone, been a member for quite some time but I very
rarely post, mainly a lurker!

Don't you just hate people like me??

Anyway just thought I would post and get some opinions, either bad or
good on what my consultant has decided to do.

Earlier this year I had my 3rd operation on my stomach to remove
another 10 lipoma's as I say this is the 3rd time in 2 years, and
sadly they have come back again.
The pain isn't too bad right now but I know it's going to get worse,
as always! So off I went to the doc's to discuss what I need to do
and he again advised speaking to the consultant surgeon that operated
earlier this year.
Now I have to say he is a great guy, easy to talk too and knows a
little about Dercums (which always helps) he had a look and feel
round my stomach area and sat down with me to discuss what he feels
would be the best way forward.

A tummy tuck and lipsuction were his thoughts!!!
Liposuction to remove all fat from around my abdomen and then a tummy
tuck to get rid of the excess skin, he feels that by removing the fat
it would stop any further lumps forming.
A few concerns he has about the op, the amount of scaring I have due
to the previous operations, mainly because of the lack of blood that
will be flowing to that area, he said there is a chance of the skin
dying off possibly.
Secondly the chance of infection and then the chance of having
children will possibly be taken away also. He said this will be
because of tightening the skin, no weight gain or loss....I would
need to maintain a steady weight from there on in.

I have been given time to think this over and would like you all to
advise me on your thoughts??

I guess one bonus would be my size....he want's me to try and loose
some weight in the next 4-6 weeks, easier said than done, eh?? But he
said he reckon's I would go down to a size 8-10(UK) after the op (not
been that size since I was in my 20's!!!!!)

Take care
Shelly x

#19535

From: Vickie Klaiber <vickie_klaiber@...>
Date: Wed Nov 29, 2006 5:27 pm
Subject: Re: Suzann Cheney

vickie_klaiber

Offline

Was going through some of the post and was
reading yours about a Dermatologist in Boston,
MA. who has treated many DD patients and had
wrote a team paper on Dercums that has been
published.  Would you mind sharing with me the
name of the dr.  and where I might find the
Dercums paper that he has published?  Can it be
found on the net or where.  I am getting ready to
start over with a new Rhematologists and this
would be helpful to me, if he hasn't heard of DD.
  I thought I might be able to do some research on
what this Dr. has published and will have even
more information.  (If I can remember when I get
there)  I have a lot of trouble with this brain
fog, and when I get in the doctor's office I lose
all memory, even with my notes I make.  Thank You
for any information you can give me.       Vickie
--- Suzann Cheney <scheney@...> wrote:

> Hi Barb,
>
> Thought I'd share my experience with two
> doctors - Both Endochrinologists
> who refused to see me based on a referral from
> my doctors stating that I
> possibly had Dercums' Disease.  Both came back
> to my doctor indicating
> they had never heard of the disease and that it
> was out of the scope of
> their practice.  So we moved on to a
> Rheumotologist at the same hospital,
> who we had learned at least knew something of
> Dercum's.  However, this
> time when we called to schedule we wrote up the
> referral to indicate that
> I was having problems with muscles, etc. and
> wanted to rule out Rheumatory
> type illnesses and that we thought I might have
> Dercum's Disease.  I got a
> call from that doctor saying she did not want
> to see me because even
> though she had heard of DD, there were no
> treatments and she didn't think
> she wanted to waste my time (more likely she
> didn't want me wasting her
> time).  I simply told her that yes we thought I
> did have DD but that since
> it is a clinical evaluation, that we had to
> rule out other types of
> rheumatory illnesses before we could get  a
> diagnosis of DD and she agreed
> to see me.  Once there that is precisely what
> we did - I was checked for
> all the standard Rhematory illnesses, and then
> we talked about why we
> thought I had DD and she listened and took the
> papers I brought with me
> about DD, then she examined my tumors.  In the
> end after all blood tests
> etc. were back, she agreed that she thought I
> had DD and then offered to
> help me find the other necessary doctors I
> needed and got me into the
> Endochrinologist that refused me.  She said she
> understood that this was a
> tag team effort to really get a DD diagnosis
> and Endchrinologists were a
> big part of that.  So, based on her referral I
> went 2 months later back
> and saw that other Doctor.  We did not hit it
> off well, but in the end of
> the exam she too agreed I had DD, then I
> travled to Dermatologist in
> Boston, MA, who had treated many DD patients
> and has actually team written
> a paper on DD that has bee published.  She knew
> on site from seeing me
> that I had DD and confirmed my diganosis as
> well.  I still have to find a
> Neurologist or Neursurgeon to complete the team
> of doctors I need.  But we
> found we got in easier by saying that we needed
> them to rule out the
> possible illnesses within their profession that
> could be causing my
> symptoms and the fact that DD might be a
> possibility.  Once I was at each
> doctor I presented the finding of others to
> that point and provided
> documents on DD and talking to them became much
> easier.
>
> So anyway that's what worked for me - I hope it
> might help you.  Best
> wishes.
>
>
>
>
>
> "Barb" <barbrrr@...>
> Sent by: Dercums_Disease@yahoogroups.com
> 11/12/2006 12:13 PM
> Please respond to
> Dercums_Disease@yahoogroups.com
>
>
> To
> Dercums_Disease@yahoogroups.com
> cc
>
> Subject
> [Dercums_Disease] Looking for a doctor
>
>
>
>
>
>
> Hi All,
> I was just wondering, when you make an
> appointment with a new doctor,
> do you tell them up front that you believe you
> have dercums or do you
> give them the symptoms and wait for them to
> tell you to loose wieght
> and you will feel better before you present
> them with the info on
> dercums.
> The reason I am asking is because I just had an
> experience with the
> University of Chicago physicans group. My
> doctor flat out said she
> had never heard of it and I needed to go to the
> university of chicago
> and ask for an endocrine evaluation...which I
> did, I had to start
> with with an app. with a nurse practioner
> there, I gave her all the
> info up front and she wrote a referral for the
> endocrine
> physicans...these doctors will not see you
> without a referral from
> another medical professional. So I called to
> make the appointment and
> the receptionist said I never heard of
> that..hold please...she came
> back and said she ask 2 doctors and they never
> heard of it. She ask
> for a place to verify that the disease existed
> and I gave her the
> dercums hope website and ask her...If they have
> not heard of the
> disease does that mean you cannot give me an
> appointment...and she
> said "thats right".....This was a week ago and
> I am still
> flabbergasted.....she said she would look it up
> and call me
> back...she has still not called. I have a call
> into the nurse
> practioner that referred me and still have not
> heard from her...but I
> think she may have been on vacation last
> week...Anyway one of my co
> workers that used to work for as a receptionist
> for a doctor says I
> should never tell them about dercums to start
> with, but try to guide
> them to come up with it on their own...which I
> feel is impossible to
> start with. How do you all handle it?
> Barb
>
>
>




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#19534

From: "nonny46" <nonny46@...>
Date: Tue Nov 28, 2006 11:10 pm
Subject: Re: Human Growth Hormone and Metformin Treatment

nonny46

Offline

Hi Cynthia,

MORE moving??!!  I hope you are able to settle in somewhere soon and
give your body a chance to catch up with itself.

The results of your injections and metformin sound spectacular!  I
have had my IGF-1 tested and according to the doctor it was "normal"-
--whatever he considered that to be.  Dr. Mousdicas just ordered
another batch of bloodwork last week, for which I grudgingly parted
with 9 more vials of blood.  I am so full of holes now, I would make
a good lawn sprinkler.  They will have a heck of a time Thursday
trying to find a place to put the IV when I go in for the
colonoscopy.

You mentioned insurance--ours is the pits!  The two surgical
procedures I have had done this year totaled nearly $3000, but the
insurance company would only consider $1200 and, as we have an
individual out-of-pocket expense of $2000, they are still paying
only 80% of that, so we will owe the surgeon about $2500.  They will
have to be content to get what we can give them every month, or they
can go get my blobbies from Dr. Herbst and hold them hostage.

Enjoy your new-found energy--mine is definitely waning at the moment
(but I'll have a good nap Thursday and some couch time.)

Judi

#19533

From: "wee5peeps@..." <wee5peeps@...>
Date: Tue Nov 28, 2006 12:26 am
Subject: Re: Cherry angiomas

mom2js_more

Offline

Lordy lordy, old? I started getting them at 29, same year the
dercum's type pain/lumps started. 29 is OLD? Just shoot me now then....

Old. grumble grumble grumble grumble....

And not "everyone" gets them, though I've had doctors say same to me.

Harumph. Old. I plan to GET old. 104 or whatever sounds nice and
young to ME.

Crystal the pre-dinosaur

On Nov 27, 2006, at 7:17 AM, nonny46 wrote:

> Thanks everyone for your replies--I cut and pasted (without names) and
> sent them to Dr. Mousdicas.  Now let's see where he goes with this!  I
> asked about this a couple of years ago, and was told "everyone gets
> them when they get old."
>
> Hope everyone has a good week,
>
> Judi
>

#19532

From: "ieyebugs" <ieyebugs@...>
Date: Mon Nov 27, 2006 6:05 pm
Subject: Re: Cherry angiomas

ieyebugs

Offline

--- In Dercums_Disease@yahoogroups.com, "nonny46" <nonny46@...>
wrote:
>
> Thanks everyone for your replies--I cut and pasted (without names)
and
> sent them to Dr. Mousdicas.  Now let's see where he goes with
this!  I
> asked about this a couple of years ago, and was told "everyone
gets
> them when they get old."
>
> Hope everyone has a good week,
>
> Judi
>

Judi,
Just saw this message and wanted to say:
I have about 20 mostly on arms, back and chest.  My husband (we
finally got married Oct. 18 on my birthday after going together 15
years)who also has DD has the blood moles on his scalp, forehead,
back, arms and legs.  Well over 100 of them. Years ago my Dad also
had these popping out all over. He had painful "fatty tumors" and
was told that they cannot hurt. He had to have several removed
because he was in so much pain. Doctors back then told him the red
blood moles were pre cancer and they wanted to remove them all. I
think they saw $$$. Dad still has these blood moles and has never
had any removed.  He is 90 years old.  Now the dermatology doctors
just say these are seen in alot of their patients. Mona

#19531

From: "Cynthia" <c_prentice2003@...>
Date: Mon Nov 27, 2006 4:29 pm
Subject: Human Growth Hormone and Metformin Treatment

c_prentice2003

Offline

Hi everyone,

I have been away and very, very busy with a fourth removal of the
year!! I am sick to death of boxes and wrapping paper.........

BUT, I have been on both HGH injections and Metformin following the
Doctor's advice and I have lost weight! I have difficulty in
believing it myself but I have lost about 26 pounds in about 4/5
weeks!!

I think finally, the fact that my insulin levels are sorted and that
I have the HGH I was lacking, my body is losing the excess body
fat...

That does not mean I am losing lumps or pain!!  I am not - indeed my
legs are now in a major flare - but I feel so much better!!

Can I remind everyone to ask to get their IGF-1 levels checked if
you have not already done so - this is definitely life changing for
me. I have never been able to lose weight - despite pratically
starving myself - so despite eating just about everything right now -
  I am losing some weight !!! I am not sure that I will be able to
keep the HGH injections (much to my despair) but they have given me
a real burst of long forgotten energy!  Only available to those who
seriously lack IGF-1 and if your insurance pays????

Kind regards to al,

Cynthia

#19530

From: "Cynthia" <c_prentice2003@...>
Date: Mon Nov 27, 2006 4:22 pm
Subject: Kelly and Dercums in ENgland

c_prentice2003

Offline

Hi Kelly,

You can not send an email address via yahoo like that but please go
and read all the info on www.dercumshope.org where if you like you
can join us for a chat on Thursdays at 7 in the evening (I am in
England too!)

Just read through all the posts here as well and ask any questions,
people are very friendly and we all try to help each other!

Kind regards,

Cynthia
--- In Dercums_Disease@yahoogroups.com, john steward
<john_steward_01@...> wrote:
>
> hello this is Kerry from England my mum has dercums disease to and
i am just trying to find out as much as i can about it to help my
mum any info about what i can do for the pain with her lumps and the
pains in her legs she cant lose weight no matter what she does i
feel so useless she has diabetes to its just so hard to see her like
that if you have any info that could help please email on my email
address which is kel@... thank you for taking time to read this.
>
> Ann <annglaister@...> wrote:           --Dear Judi and everyone :)
>
> Sitting here having a cup of tea ( you have to have a tea in the
> mornings in England, it's the law., otherwise we wouldn't get any
> tourists!! lol)- I could not believe your Doctor asking your
husband
> where you were hiding the cookies!!!!! I want to slap his/her
face!!
> having said that, the insensitivity and extreme stupidity of so
> called intelligent Docotors never fails to amaze me. When my
> daughter was 9 yes 9!!! her face was covered in Acne I took her to
my
> doctor and do you know what he said to her ... "I suggest you find
a
> friend with more spots then you wont feel so bad!!!' oh yes!!! 6
> years at medicial school for that cure! > don't you just love
them!
> Another warm sunny day here in Merrie Olde England ( don't think
we
> can take much more of this, we are getting umberella withdrawal
> symptoms!!)
>
> ..............................................................
>
> > Hi Ann,
> >
> > Good to hear from you again! Sunny and warm in England? You
> wondered
> > where the fog went...besides the brain fog it is cold and foggy
> here
> > this morning in Indiana. We're supposed to get snow showers
> tomorrow.
> >
> > I was keeping a food diary at one time, and when I went to see
one
> > very obnoxious doctor, he looked at the diary, then looked at
Ron
> (who
> > always accompanies me) and said "maybe you'd better look and see
> where
> > she's hiding the cookies and candy!" We can't win!!
> >
> > Putting on another sweater...
> >
> > Judi
> >
>
>
>
>
>
>
> ---------------------------------
>  All new Yahoo! Mail "The new Interface is stunning in its
simplicity and ease of use." - PC Magazine
>

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#19529

From: "nonny46" <nonny46@...>
Date: Mon Nov 27, 2006 3:17 pm
Subject: Cherry angiomas

nonny46

Offline

Thanks everyone for your replies--I cut and pasted (without names) and
sent them to Dr. Mousdicas.  Now let's see where he goes with this!  I
asked about this a couple of years ago, and was told "everyone gets
them when they get old."

Hope everyone has a good week,

Judi

#19528

From: maud hayes <maudhayes@...>
Date: Mon Nov 27, 2006 3:10 pm
Subject: Re: Cherry angiomas

maudhayes

Offline

I get cherry angiomas all over my thighs, trunk and arms when I am stressed or when I go in the sun - they tend to go away after a day or so - but they pop up and are quite large - very attractive :/

Maud

nonny46 <nonny46@...> wrote:

Dear group,

Dr. Mousdicas noticed how many cherry angiomas I have, and feels that
this really is unusual. I commented that they seemed to get markedly
worse as this disease has progressed. He asked me to find out how
many of you also have a large number of them (they look like red,
raised moles--also called "blood moles.") Couldl you please either
email me directly, or just post an answer here:

I have a large number of cherry angiomas
They have gotten worse as the disease progresses

Thanks for your help! He really is trying to find some answers.

Judi

Access over 1 million songs - Yahoo! Music Unlimited.

#19527

From: maud hayes <maudhayes@...>
Date: Mon Nov 27, 2006 3:10 pm
Subject: Re: Cherry angiomas

maudhayes

Offline

I get cherry angiomas all over my thighs, trunk and arms when I am stressed or when I go in the sun - they tend to go away after a day or so - but they pop up and are quite large - very attractive :/

Maud

nonny46 <nonny46@...> wrote:

Dear group,

Dr. Mousdicas noticed how many cherry angiomas I have, and feels that
this really is unusual. I commented that they seemed to get markedly
worse as this disease has progressed. He asked me to find out how
many of you also have a large number of them (they look like red,
raised moles--also called "blood moles.") Couldl you please either
email me directly, or just post an answer here:

I have a large number of cherry angiomas
They have gotten worse as the disease progresses

Thanks for your help! He really is trying to find some answers.

Judi

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#19526

From: barbara croker <lyonziefiddler@...>
Date: Mon Nov 27, 2006 2:18 am
Subject: Re: Re: Knock Shrine....

lyonziefiddler

Offline

Thank you , my parents are from Ireland they have been taking us there since we were little, and my sister moved over there 3years ago... anyway, my mom every year takes me to knock.. it is a great place...

Have a great week...

Barbara

nonny46 <nonny46@...> wrote:

Dear Barbara,

What a wonderful trip you have had, and how thoughtful of you to think
of us when you visited the Knock Shrine. I was last in Ireland in
1968, and would very much love to return.

Personally, I am not offended by your gesture, and I am not Catholic,
but hey, we were all put here by the same One!

Judi

Everyone is raving about the all-new Yahoo! Mail beta.

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#19525

From: "nonny46" <nonny46@...>
Date: Sun Nov 26, 2006 7:27 pm
Subject: Re: Life Expectancy

nonny46

Offline

Dear Sherry,

I think many people have had DD and lived to ripe old ages, while
others may have succumbed earlier.  As with everything else, I think
this is an indivdiual thing, as we are not all experiencing everything
the same here.  Personally, I plan to die at 104 with a garden tool in
my hand...

Judi, age 60 and diagnosed 3-4 years ago but probably been suffering
for at least 20 years

#19524

From: "nonny46" <nonny46@...>
Date: Sun Nov 26, 2006 7:19 pm
Subject: Re: Knock Shrine....

nonny46

Offline

Dear Barbara,

What a wonderful trip you have had, and how thoughtful of you to think
of us when you visited the Knock Shrine.  I was last in Ireland in
1968, and would very much love to return.

Personally, I am not offended by your gesture, and I am not Catholic,
but hey, we were all put here by the same One!

Judi

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#19523

From: "dora" <arod59_2@...>
Date: Sat Nov 25, 2006 1:07 am
Subject: Re: Cherry angiomas

arod59_2

Offline

--- In Dercums_Disease@yahoogroups.com, "M A BAKER" <MABaker86@...>
wrote:
>
> Me too.  From pin prick size to BB size from my scalp to my knees
but mostly on my abdomen and thighs.  They rarely hurt and some have
eventually turned brown and then peeled off.  I had one doctor that
insisted that I had to be a drinker because "you usually see these in
alcoholics."  Yeah, and lipoma's don't hurt!  (Sorry, just came from
a visit with the new surgeon on post that is going to be removing
hubby's suspected lipoma...that hurts like heck!)
> "Spotted" Feather
>
>   ----- Original Message -----
>   From: nonny46<mailto:nonny46@...>
>   To:
Dercums_Disease@yahoogroups.com<mailto:Dercums_Disease@yahoogroups.com
>
>   Sent: Wednesday, November 22, 2006 8:37 AM
>   Subject: [Dercums_Disease] Cherry angiomas
>
>
>   Dear group,
>
>   Dr. Mousdicas noticed how many cherry angiomas I have, and feels
that
>   this really is unusual. I commented that they seemed to get
markedly
>   worse as this disease has progressed. He asked me to find out how
>   many of you also have a large number of them (they look like red,
>   raised moles--also called "blood moles.") Couldl you please
either
>   email me directly, or just post an answer here:
>
>   I have a large number of cherry angiomas
>   They have gotten worse as the disease progresses
>
>   Thanks for your help! He really is trying to find some answers.
>
>   Judi
>
    hi, i also have many of these angiomas & i have hundreds of the
small lipomas.and they do cause pain i don't care what the doctors
say.hope you find something out about this.   dora carpenter

#19522

From: "john_steward_01" <john_steward_01@...>
Date: Fri Nov 24, 2006 10:30 am
Subject: my mum

john_steward_01

Offline

Hello everybody I am new here so please bear with me .
My brother John has posted here before but this is my first time
My name is Kerry from England, my mum has dercums too,and we are trying
to find out as much as we can about it to get my mum any info about
what we can do for the pain with her lumps and the pains she suffers in
her legs,she can't seem to lose weight no matter how hard she tries, I
feel so useless, she also suffers with diabetes and it's just so hard
to see her like that if any of you have any info that could help please
could you email to my e-mail address kel@... or my
brother John on john_steward_01@... thank you for taking the
time to read this.


Kerry

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#19521

From: "shefox908" <shefox908@...>
Date: Thu Nov 23, 2006 11:03 pm
Subject: Life Expectancy

shefox908

Offline

Hi everyone. Happy Thanksgiving!
Something has been bothering me since I was diagnosed in Sept. with DD.
My doctors are totally clueless when I ask them, so I'm putting it out
there for all of you. What is the average life expectancy for someone
diagnosed with DD? If anyone has any info on this subject I would
certainly appreciate hearing from you. Does it have anything to do with
the age you are when first start getting symptoms?

Sherry