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#20583 From: "Jackie Hanan" <rubyjax@...>
Date: Thu Mar 1, 2007 8:06 am
Subject: RE: Welcome Members - Support for Dercums Disease
rubyjax7
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Thanks David for sharing this information with us. I am glad you started this group because I would never have known about DD if I hadn’t come across it during the e-group days. I have made some wonderful friends here, and you are right it has grown tremendously since it first was formed.

 

How have you been doing?

 

Smiles, Jackie

 


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of David Hughes
Sent: Tuesday, February 27, 2007 8:02 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Welcome Members - Support for Dercums Disease

 

Welcome Members,

My name is David and I am the Founder of the our yahoo support group and the TransGlobal Health Community Center (TGHCC). This group is one of more than 600 others that make up the TGHCC. The TGHCC helps promote our groups on the web.

It have been amazed at how much this group has grown over the years. I also hope that each of you have been blessed by this group and have made many new friends.

Like many of you, I am a proud parent. I'm a single parent (father) of three wonderful kids. My oldest daughter is 18 and I have two boys, ages 13 & 11, affected by an extremely rare genetic disorder called X-Linked Alpha Thalassemia Mental Retardation Syndrome (ATR-X). Both my sons are severely mentally and physically challenged. Both are non verbal and life long dependant upon care.

Back in 1999 when their mother and I learned of their diagnosis, we needed the information and support from other parents with boys like ours. We learned that there were less than a hundred known affected boys in the world. Our families were spread out all over the world and communicating with them was not easy. It was then that I started looking for a way for us to communicate using the internet. It was then that I discovered a service called eGroups and started a support group for ATR-X. Today, we have 146 members.

In my search for a way to better communicate with others, I tryed to find a website dedicated to providing support groups for various diseases and disorders but only found sites for specific to one disorder. During this period of time, I became involved with NORD - National Organization for Rare Disorders and learned that there were over 6000 rare diseases. Since I could not find a website dedicated to providing support groups, I decided to build one myself. This was the beginning of the TGHCC. Today, the TGHCC offers over 600 support groups and serves 50,000+ members.

Over the years, we have been blessed with a little publicity from various sources. The Dallas Morning News did a complete 3 page story on the boys and our family. Later, the New York Times did an article on the Transglobal Health Community Center and our outreach mission. The articles were picked up by various other publication and published.

I am always looking for ways to help promote and support others affected by these rare "orphan" diseases and disorders. I am also committed to helping support medical research for rare "orphan" diseases and disorders. Each month, 60% of the profit from sale of items in the TransGlobal Health Community store goes to medical research. I have designated two diseases/disorders each month to receive this funding.

Professionally, I work for Travelers Insurance as an Underwriting Account Manager. Prior to joining Travelers, I was a 15 year veteran Police Officer with the Baylor Health Care System.

I hope this helps give you an idea of who I am. Providing support for others has become my passion. Helping others has also helped me cope with the daily challenges.

My prayers are always with you and your families. God knows we all need the help.

David

Website: http://transglobalhealth.com

Phone: 214-440-1072

Fax: 1-800-397-0065

Yahoo Messenger: transglobalhealth@...

eMail: dhhughes@...


#20582 From: "Jackie Hanan" <rubyjax@...>
Date: Thu Mar 1, 2007 7:59 am
Subject: RE: its me jodith
rubyjax7
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Hi Jodith,…….I am Jackie and I am 56, but I think I started my DD journey when I was in my thirties. My son and daughter are both in their 30’s now, and my son has a dx of DD, and my dau doesn’t but she is developing the lumps in the same places as the two of us.

My first lump showed up on my lower leg, but I’ve had pain in my forearms since the early 80’s. At that time they dx’ed me with Fibrositis [Fibromyalgia now] I now think it was the beginning of my DD. I was 34 when I got the FM dx. Mine has been a slow progression and all of the pain I had/have I attributed it to other things. I also have a dx of MS, but I am questioning that dx now too.

I have many lumps and fatty masses all over my body now, and I have become quite debilitated from it. I feel like 100 at times, whatever that feels like? Lol…. I too wonder how many internal ones I have?

 

Were you able to get SS on a DD dx? I ask because my son may be headed that way. His lumps in his lower back are along side his spine and are very painful. He doesn’t know how much longer he will be able to work, and he is a single father with custody of two little angels. [my grand daughters! J] So he is trying to get a back up plan in motion in case he worsens.

 

Welcome to our group. I don’t think I’ve seen you here before. I was away for awhile, so maybe you have been here all along! :-)

 

Smiles from Jackie in Oregon :-)

 

 


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of jzanker
Sent: Tuesday, February 27, 2007 3:47 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] its me jodith

 

Hi everyone ,

          just wondering how old eveyone is? I am 38 years old

          and started getting lumps at the age of 21.I felt my first lump by my rib cage .I have so many now i cant count God only knows how many on the inside that i cant feel.I have alot in my back.I have been out of work for 5 years now and getting social security. Most of my lumps are down my whole left side.Thiere isnt many Drs that even know what dd is.I feel like im about 60 years old.

                                            

          well it is sooo great that im not alone  ty all

                                                             jodith


#20581 From: Pamela Harrison <ozziespamela@...>
Date: Thu Mar 1, 2007 3:08 am
Subject: Re: Life's Twists and Turns
ozziespamela
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My Goodness Suzann!
What a nightmare!
I hope your daughter is doing better and I am praying
for her full recovery.
Hugs,
Pamela





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#20580 From: Jennifer Kephart <jlkep@...>
Date: Thu Mar 1, 2007 2:04 am
Subject: Re: its me jodith
jlkep
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HI
Welcome, I am 35 years old and felt my first lumps about a year ago.
I wonder where I'll be 17 years into this disease-they're multiplying fast.good luck to you
Jen

jzanker <jzanker@...> wrote:
Hi everyone ,
          just wondering how old eveyone is? I am 38 years old
          and started getting lumps at the age of 21.I felt my first lump by my rib cage .I have so many now i cant count God only knows how many on the inside that i cant feel.I have alot in my back.I have been out of work for 5 years now and getting social security. Most of my lumps are down my whole left side.Thiere isnt many Drs that even know what dd is.I feel like im about 60 years old.
                                            
          well it is sooo great that im not alone  ty all
                                                             jodith


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#20579 From: Sherry Fox <shefox908@...>
Date: Thu Mar 1, 2007 12:20 am
Subject: Re: Life's Twists and Turns
shefox908
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Hi Suzann
 
Sorry to hear about your daughter Cassandra. I sure do hope that she heals quickly and completly.
 
I just wanted to mention to you a drug by the name of Provigil made by Cephalon. The psychiatrist I have been seeing gave me a voucher for a weeks worth of this drug. The drug was prescribed to me for my memory/concentration problems and I could see a significant improvement immediately. My doctor is presently trying to get me approved on Cephalon's Patient Assistance Program because of the improvement that I saw while on it that week. The doctor told me that Provigil costs hundreds of dollars a month to be on it and that is why I am not taking it at present. I thought I would just mention it to you.
 
Take Care,
 
Sherry

Suzann Cheney <scheney@...> wrote:



Hi Everyone,
 
Thought I should explain my absence from the group if any of you are missing me. 
I'm going through a really rough time right now.  I've been out of work (ordered by my doctor for one week and then on Monday I was ordered out for two more weeks).  And have seen a Neurologists, etc. to try to explain my memory lapses which are causing me problems at work and the Anxiety that is uncontrollable and continuing to exhaserbate the situation.  Will need to see a Psycologist I guess to handle the anxiety issues and am looking for one in the area so that I can hopefully go back to work soon.
 
During this past weekend my youngest daughter had a cat scratch her in the eyeball (well scratch is putting it mildly - it tore her eyeball and the claw cut through all the layers of the eye about 1/2 cm long).  We had to rush her to the hospital only to be sent from there on Saturday evening to the eye doctor 35 miles away, and from there on a mad dash to Burlington, Vermont.  We left Massena (the eye doctors) at 9 pm Saturday night and arrived in Burlington, VT at 11:45 pm.  It's normally a 3 to 3 1/2 hour drive depending on traffic and weather, so that shows you how urgent it was that we get there quickly.  My husband drove on back roads of speeds up to 75 & 80 miles per hour.  I white knuckled it the whole way, while worrying about my daughter in the back see and whether or not she would lose her eye sight the whole time.  When we arrived we had beat the surgeon, and had to wait about another hour.  She was taken into surgery at 2 am and came out at 4 am.  The doctor was very concerned about the damage to her Retna, but had a really hopeful attitude that it would maybe be ok, but with all the blood behind the eye was not certain.  Duane and I stayed with Cassandra in recovery until 5:30 am, at which time they still did not have  a bed for her, and we were told to go and find a hotel to get a few hours of sleep.  At 6:30 am, we found one and settled in until 10:30 am.  My husband fell asleep right away, but my brain would not shut down and I ended up with 2 1/2 hours of sleep in a 48 hour period to function on.  We returned to the hospital and waited to see the doctor at 2 pm that afternoon.  He released us at 4 pm and then we had to wait for the nurses to bring paperwork to close the deal, with appointments to return Tuesday (which was yesterday now).  We got home at 9:30 pm Sunday night.  On Monday she had to go have a tetnus shot and we had to drive to Massena to followup with the eye doctor again.  Yesterday we were back in Burlington to see the surgeon and then a Retna Specialist.  All are really encouraged that things are looking pretty positive given the seriousness of the injury, but she is by no means out of the woods.  The fear of infection still lingers and the fact that the Retna specialist still cannot completely determine if the Retna took a hit with the claw due to the blood still behind the eye, so we must not continue to watch for infection, shadows in her vision, pain, etc.  if any of these develop we're on a fast trip back to Burlington for more surgery.  We follow up in two weeks with the Retna Specialist again, and hopefully if infection hasn't set in by that time, he'll be able to see more of the retna by then and we will know for certain if she is out of the woods or not.
It has been a very harrowing exerpience.
 

 I'm trying to catch up on all the posts during my absence, so I hope you are all doing ok and that I haven't missed something catastrophic for any of you.  If so, please know that I hope all will be well for you soon.
 
Take care everyone.
 
Suzann Cheney




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#20578 From: Jennifer Kephart <jlkep@...>
Date: Wed Feb 28, 2007 11:31 pm
Subject: Re: Life's Twists and Turns
jlkep
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OH my goodness, Suzann, I feel your daughter's pain and yours. I had a softball crack me in the nose and eye (can't catch) and break the nose and smash the contact lens into my eye.. It was all very scary. People in the ER came to see the girl with the messed up eye. It took a long time for it to heal, some surgery , some eye drops to dilate the pupil (wasn't working at all) for about 6  months, and then return to somewhat normal. It is ok now except that i can't get contact lenses to fit. It was a long road, but it is almost normal. I wish your daughter luck in her recovery . It's amazing how the body can heal itself and i hope she is that fortunate. take care and try to get some rest
jen

Suzann Cheney <scheney@...> wrote:



Hi Everyone,
 
Thought I should explain my absence from the group if any of you are missing me. 
I'm going through a really rough time right now.  I've been out of work (ordered by my doctor for one week and then on Monday I was ordered out for two more weeks).  And have seen a Neurologists, etc. to try to explain my memory lapses which are causing me problems at work and the Anxiety that is uncontrollable and continuing to exhaserbate the situation.  Will need to see a Psycologist I guess to handle the anxiety issues and am looking for one in the area so that I can hopefully go back to work soon.
 
During this past weekend my youngest daughter had a cat scratch her in the eyeball (well scratch is putting it mildly - it tore her eyeball and the claw cut through all the layers of the eye about 1/2 cm long).  We had to rush her to the hospital only to be sent from there on Saturday evening to the eye doctor 35 miles away, and from there on a mad dash to Burlington, Vermont.  We left Massena (the eye doctors) at 9 pm Saturday night and arrived in Burlington, VT at 11:45 pm.  It's normally a 3 to 3 1/2 hour drive depending on traffic and weather, so that shows you how urgent it was that we get there quickly.  My husband drove on back roads of speeds up to 75 & 80 miles per hour.  I white knuckled it the whole way, while worrying about my daughter in the back see and whether or not she would lose her eye sight the whole time.  When we arrived we had beat the surgeon, and had to wait about another hour.  She was taken into surgery at 2 am and came out at 4 am.  The doctor was very concerned about the damage to her Retna, but had a really hopeful attitude that it would maybe be ok, but with all the blood behind the eye was not certain.  Duane and I stayed with Cassandra in recovery until 5:30 am, at which time they still did not have  a bed for her, and we were told to go and find a hotel to get a few hours of sleep.  At 6:30 am, we found one and settled in until 10:30 am.  My husband fell asleep right away, but my brain would not shut down and I ended up with 2 1/2 hours of sleep in a 48 hour period to function on.  We returned to the hospital and waited to see the doctor at 2 pm that afternoon.  He released us at 4 pm and then we had to wait for the nurses to bring paperwork to close the deal, with appointments to return Tuesday (which was yesterday now).  We got home at 9:30 pm Sunday night.  On Monday she had to go have a tetnus shot and we had to drive to Massena to followup with the eye doctor again.  Yesterday we were back in Burlington to see the surgeon and then a Retna Specialist.  All are really encouraged that things are looking pretty positive given the seriousness of the injury, but she is by no means out of the woods.  The fear of infection still lingers and the fact that the Retna specialist still cannot completely determine if the Retna took a hit with the claw due to the blood still behind the eye, so we must not continue to watch for infection, shadows in her vision, pain, etc.  if any of these develop we're on a fast trip back to Burlington for more surgery.  We follow up in two weeks with the Retna Specialist again, and hopefully if infection hasn't set in by that time, he'll be able to see more of the retna by then and we will know for certain if she is out of the woods or not.
It has been a very harrowing exerpience.
 

 I'm trying to catch up on all the posts during my absence, so I hope you are all doing ok and that I haven't missed something catastrophic for any of you.  If so, please know that I hope all will be well for you soon.
 
Take care everyone.
 
Suzann Cheney




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#20577 From: Tami <ladydubois@...>
Date: Wed Feb 28, 2007 11:26 pm
Subject: Re: Social Security Disability
ladydubois
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Send Email Send Email
 
Thanks. I called my case worker clinical person..He
told me to take my paperwork with me to the appt.
about DD. He said they just listed things, but it is a
general overall physical. Tami


Tami Thompson-Dossey

#20576 From: Jennifer Kephart <jlkep@...>
Date: Wed Feb 28, 2007 11:17 pm
Subject: Re: Social Security Disability
jlkep
Offline Offline
Send Email Send Email
 
Sorry, Tami. I don't know anything about this, but I hope it goes smoothly for you. Good luck
Jen

Tami <ladydubois@...> wrote:
I sent an email to the group earlier of my impending
SSD doctor eval. Doesn't anyone have any input?
Please, I need input on this. Tami

Tami Thompson-Dossey




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#20575 From: "bkwrm40" <bkwrm40@...>
Date: Wed Feb 28, 2007 8:38 pm
Subject: Left vs Right....Right Here!
bkwrm40
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I had my very first noticeable lipoma at age 27 on my right thigh. To
this day, my right side (arm, back, leg) is more effected than the
left. Don't get me wrong, my left is also covered...but my right side
is much weaker, with larger 'massed areas'.

Sue

#20574 From: lenightmoods@...
Date: Wed Feb 28, 2007 7:58 pm
Subject: Re: Re: [Left vs Right]
lenightmoods
Offline Offline
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Hello,
I am 59 and also have lumps on whole body but most painful on left side. I thought it was because of on on the job injury that affected my left side with trauma and subsequent cortisone shots in those areas, also the lipomas are attracted to trauma sites. Maybe Not Huh? Going to tax guys so gotta go but keep up the search
Thanks Davana
 
o---------- Original message --------------
From: Pamela Harrison <ozziespamela@...>

Hi Jodith and Sherry,

I'm 52 and also left sided. In fact, I would have said
exactly what Sherry said, only I had lumps much
earlier.

Pamela
--- Sherry Fox <shefox908@yahoo.com> wrote:

> Hi Jodith,
>
> It is so interesting how you mentioned having most
> of your lumps on the left side of your body. I have
> been meaning to post a "left vs right" in regards to
> either having more lumps on the left side or larger
> lumps on the left side. With me it is both larger
> and more.Typically, what I have on my left side is a
> precurser to what I will have on my right side in
> given time. This might sound crazy but if it is so
> that most of us have more or larger lipomas on our
> left side or if they usually start on our left side
> for that matter as with me, could it be because of
> our heart being on our left side? Has anyone out
> there ever heard anything like that before???
>
> My age is 51 and I probably noticed my first
> lipoma at about 41. I think so late maybe because I
> did not start menapause untill this year
>
> Eager To Hear From All,
>
> Sherry

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#20573 From: Tami <ladydubois@...>
Date: Wed Feb 28, 2007 7:07 pm
Subject: Re: Re: [Left vs Right]
ladydubois
Offline Offline
Send Email Send Email
 
The first ones that I noticed were on the left side.
It did not take long to spread everywhere else,
though. Left lower back to be exact. Tami


Tami Thompson-Dossey

#20572 From: barbara croker <lyonziefiddler@...>
Date: Wed Feb 28, 2007 6:38 pm
Subject: Re: Life's Twists and Turns
lyonziefiddler
Offline Offline
Send Email Send Email
 
Hey Suzann, Please hang in there I know you are going through alot know I am thinking of you daily and praying for you and you family . I will call you when things clam down for you .........
Barbara

Suzann Cheney <scheney@...> wrote:



Hi Everyone,
 
Thought I should explain my absence from the group if any of you are missing me. 
I'm going through a really rough time right now.  I've been out of work (ordered by my doctor for one week and then on Monday I was ordered out for two more weeks).  And have seen a Neurologists, etc. to try to explain my memory lapses which are causing me problems at work and the Anxiety that is uncontrollable and continuing to exhaserbate the situation.  Will need to see a Psycologist I guess to handle the anxiety issues and am looking for one in the area so that I can hopefully go back to work soon.
 
During this past weekend my youngest daughter had a cat scratch her in the eyeball (well scratch is putting it mildly - it tore her eyeball and the claw cut through all the layers of the eye about 1/2 cm long).  We had to rush her to the hospital only to be sent from there on Saturday evening to the eye doctor 35 miles away, and from there on a mad dash to Burlington, Vermont.  We left Massena (the eye doctors) at 9 pm Saturday night and arrived in Burlington, VT at 11:45 pm.  It's normally a 3 to 3 1/2 hour drive depending on traffic and weather, so that shows you how urgent it was that we get there quickly.  My husband drove on back roads of speeds up to 75 & 80 miles per hour.  I white knuckled it the whole way, while worrying about my daughter in the back see and whether or not she would lose her eye sight the whole time.  When we arrived we had beat the surgeon, and had to wait about another hour.  She was taken into surgery at 2 am and came out at 4 am.  The doctor was very concerned about the damage to her Retna, but had a really hopeful attitude that it would maybe be ok, but with all the blood behind the eye was not certain.  Duane and I stayed with Cassandra in recovery until 5:30 am, at which time they still did not have  a bed for her, and we were told to go and find a hotel to get a few hours of sleep.  At 6:30 am, we found one and settled in until 10:30 am.  My husband fell asleep right away, but my brain would not shut down and I ended up with 2 1/2 hours of sleep in a 48 hour period to function on.  We returned to the hospital and waited to see the doctor at 2 pm that afternoon.  He released us at 4 pm and then we had to wait for the nurses to bring paperwork to close the deal, with appointments to return Tuesday (which was yesterday now).  We got home at 9:30 pm Sunday night.  On Monday she had to go have a tetnus shot and we had to drive to Massena to followup with the eye doctor again.  Yesterday we were back in Burlington to see the surgeon and then a Retna Specialist.  All are really encouraged that things are looking pretty positive given the seriousness of the injury, but she is by no means out of the woods.  The fear of infection still lingers and the fact that the Retna specialist still cannot completely determine if the Retna took a hit with the claw due to the blood still behind the eye, so we must not continue to watch for infection, shadows in her vision, pain, etc.  if any of these develop we're on a fast trip back to Burlington for more surgery.  We follow up in two weeks with the Retna Specialist again, and hopefully if infection hasn't set in by that time, he'll be able to see more of the retna by then and we will know for certain if she is out of the woods or not.
It has been a very harrowing exerpience.
 

 I'm trying to catch up on all the posts during my absence, so I hope you are all doing ok and that I haven't missed something catastrophic for any of you.  If so, please know that I hope all will be well for you soon.
 
Take care everyone.
 
Suzann Cheney




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#20571 From: Pamela Harrison <ozziespamela@...>
Date: Wed Feb 28, 2007 6:37 pm
Subject: Re: Re: [Left vs Right]
ozziespamela
Offline Offline
Send Email Send Email
 
Hi Jodith and Sherry,

I'm 52 and also left sided. In fact, I would have said
exactly what Sherry said, only I had lumps much
earlier.

Pamela
--- Sherry Fox <shefox908@...> wrote:

> Hi Jodith,
>
>   It is so interesting how you mentioned having most
> of your lumps on the left side of your body. I have
> been meaning to post a "left vs right" in regards to
> either having more lumps on the left side or larger
> lumps on the left side. With me it is both larger
> and more.Typically, what I have on my left side is a
> precurser to what I will have on my right side in
> given time. This might sound crazy but if it is so
> that most of us have more or larger lipomas on our
> left side or if they usually start on our left side
> for that matter as with me, could it be because of
> our heart being on our left side? Has anyone out
> there ever heard anything like that before???
>
>   My age is 51 and I probably noticed my first
> lipoma at about 41. I think so late maybe because I
> did not start menapause untill this year
>
>   Eager To Hear From All,
>
>   Sherry




________________________________________________________________________________\
____
Need a quick answer? Get one in minutes from people who know.
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#20570 From: "badbeanie2006" <badbeanie@...>
Date: Wed Feb 28, 2007 6:03 pm
Subject: Re: [Left vs Right]
badbeanie2006
Offline Offline
Send Email Send Email
 
Hi Jodith,

I also started out with my left side being the intial problem, although
is soon spread to my right side after approx 2yrs.

Now though I have been experiencing the most dreadful pain in my lower
back with seems to be mainly causing probs on my left side again.
My Doc seems to think Dercums in the spine, which is affecting my
muscles and nerves to the left hip, can be sooo painful at times I can
bearly walk and most nights are broken regularly during sleep due to
pain/discomfort.

I'm 42 and first started to notice something was wrong when I was 39
and I am NOT Post Menapausal...lol, and I'm not looking forward to that
along with the Dercums...LOL!!

What a joy to be a woman eh??

Shelly (Middlesbrough, UK)

#20569 From: "badbeanie2006" <badbeanie@...>
Date: Wed Feb 28, 2007 5:55 pm
Subject: Re: Life's Twists and Turns
badbeanie2006
Offline Offline
Send Email Send Email
 
Hi Suzzann

I'm soooo sorry to hear about your daughter, I just cannot begin to
imagine the pain she has gone through, keeping my fingers crossed all
will be well for her.

Give her a BIG HUG from us all and wish her well!!
Stay positive!

*have gone to tape up my cat's claws*

Shelly (Middlesbrough UK)

#20568 From: "badbeanie2006" <badbeanie@...>
Date: Wed Feb 28, 2007 5:50 pm
Subject: Re: Problems with Teeth
badbeanie2006
Offline Offline
Send Email Send Email
 
Hi Benita,

I too have had a few problems recently, infact today I have been at
the Dentist to have 2 teeth removed.
It seems I have 'Something' pushing my front right side teeth
out...very bizzarre, there is no pain and no receeding gums. I have
always been very particular with my dental hygeine so this had
concerned me.
When my rigth front was pulled today my dentist had a hard job
releasing it even though it was loose, eventually when it came out it
the root was encased with what looks like a lump.
This evening I have a dreadful feeling in my right nasal passage and
spoke to the dentist ref this, this afternoon, it seems that this is
where the lump had been growing and obviously why I have some
discomfort.

Apart from that it seems the left side of my mouth my teeth are in
fine health.
Has anyone else come across this problem??
Could the lump be Dercums...??

Shelly (Middlesbrough, UK)

#20567 From: Fabric100@...
Date: Wed Feb 28, 2007 3:43 pm
Subject: Re: Reports By Specialists & What you are being evaluated for
fabric102
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Oh good heavens, don't you just 'love' that professional double speak?  I rmember taking my 3rd son to a neuropsychiatrist for educational testing.  The little boy (my son, not the doctor though I'm not certain of the other's emotional age) was SO attached to me that we used to joke that he had to be weaned with a chainsaw.  At 8, he was still a Momma's boy who preferred staying with Mom than being with anyone else.  Anyway, as part of the evaluation, the MD had my son draw a picture of an activity he enjoyed with his family.  The night prior to appt., he had played 'softball' with his brothers, Dad and sister outside our house.  I had watched periodically from the window as I was cleaning the house while they played. This scrawny little kid couldn't hit the ball more than a few feet but he THOUGHT he was Mickey Mantle.  So, he would insist that everyone back up when it was his turn to bat.  AND he insisted that I come to the window to watch.  This is the scene he drew for the doctor.  He's at bat all by himself, his sister is the 'pitcher' and the remainder of the family males are pictured way out in the outfield (in reality maybe 5 feet away).  I'm at the window watching happily (I got a smile in the detailed drawing).  It was really a lovely, realistic picture that I saw the day of the appointment.  The final report?  "Subject is detached from family members, most pronounced is estrangement and detachment from the Mother who is shown behind bars."  I laughed out loud as did the school officials who knew Steven well.  Ah, the joys of interpretation.

I do agree that your primary doctors are your best advocates.  For the meantime, perhaps they can incorporate, quote and refer to published articles about DD.  Timeliness is always an issue.

My husband is going through the disability claim business with the VA.  When he saw a specialist, he was told that they can only examine him for the specific conditions listed by the VA.  If the paperwork didn't list a malady, the specialist could not examine nor comment on it.  I don't know if it is the same thing for SSI or not.

Hang in there and good luck!!

Anne

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#20566 From: Fabric100@...
Date: Wed Feb 28, 2007 3:33 pm
Subject: Re: David
fabric102
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What more can anyone say than "THANK YOU!!"  You have provided an outlet for countless individuals who have no other place to turn.

Thanks!
Anne

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#20565 From: Sherry Fox <shefox908@...>
Date: Wed Feb 28, 2007 3:41 pm
Subject: Re: [Left vs Right]
shefox908
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Hi Jodith,
 
It is so interesting how you mentioned having most of your lumps on the left side of your body. I have been meaning to post a "left vs right" in regards to either having more lumps on the left side or larger lumps on the left side. With me it is both larger and more.Typically, what I have on my left side is a precurser to what I will have on my right side in given time. This might sound crazy but if it is so that most of us have more or larger lipomas on our left side or if they usually start on our left side for that matter as with me, could it be because of our heart being on our left side? Has anyone out there ever heard anything like that before???
 
My age is 51 and I probably noticed my first lipoma at about 41. I think so late maybe because I did not start menapause untill this year
 
Eager To Hear From All,
 
Sherry

jzanker <jzanker@...> wrote:
Hi everyone ,
          just wondering how old eveyone is? I am 38 years old
          and started getting lumps at the age of 21.I felt my first lump by my rib cage .I have so many now i cant count God only knows how many on the inside that i cant feel.I have alot in my back.I have been out of work for 5 years now and getting social security. Most of my lumps are down my whole left side.Thiere isnt many Drs that even know what dd is.I feel like im about 60 years old.
                                            
          well it is sooo great that im not alone  ty all
                                                             jodith


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#20564 From: Fabric100@...
Date: Wed Feb 28, 2007 3:32 pm
Subject: RE: EEG vs EKG
fabric102
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Good morning--

Thought I should clarify the difference as they are often confused.

An EEG is a test of brain waves.  Small electrode sensor thingies are placed on the scalp and the electric activity of the brain is recorded.  An EEG is usually done for short period of time in a doctor's office, hospital or clinic.  For some diagnosis, a longer EEG may be performed requiring the patient to carry around a small pouch that contains recording information.  This is often done to try and 'capture' sporadic seizure activity.  This is, basically, the test you see on TV when they determine someone is brain dead.

An EKG is an electrocardiogram which monitors electrical activity of the heart.  Again, sensors are attached to the chest in various places and the 'rhythms' of the heart are captured.  An EKG can also be done in an office or a patient may be required to wear the electrodes and carry the little pouch around to record longer term heart activity.  On TV, you see this when someone 'flatlines' or 'codes'. 

Hope this helps a little. 

Anne

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#20563 From: "twogirlsbebe" <bnitasjazz@...>
Date: Wed Feb 28, 2007 3:27 pm
Subject: Problems with Teeth
twogirlsbebe
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Send Email Send Email
 
Hello all!

I thought I read a posting or 2 discussing problems with teeth.
Thought I would share what my dentist told me about problems I've been
having with mine - according to him, it is very common for people with
autoimmune problems to have tooth decay from the inside of the tooth
out despite excellent oral hygiene.  I lost a tooth several months ago
which had to be pulled because it dissolved from the inside out.  I had
a 2nd tooth he thought was going to be next - it just broke to the
nerves but guess what - it is completely dead inside.  Chalk 2 lost
teeth in past 7 or 8 months to DD!  The first wound just healed a month
or so ago where he pulled the tooth.  And now I'll have another . . .
Oh well, what's one more hole in my head, right? . . .

Hope this helps others.

Benita

#20562 From: Sherry Fox <shefox908@...>
Date: Wed Feb 28, 2007 3:08 pm
Subject: Re: Social Security Disability
shefox908
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Hi Tami,
 
I'm not sure if I should let you know this or not because I'm not trying to discourage you but rather prepare you. Anyhow I just this month was informed that my SSD claim was denied. I have had attorney's from the begining and when I spoke to them about the denial the primary reason they gave was that SS only gives your doctors about 20 days to submit your medical info. Then they go ahead and make a decision even though they knowingly have not given all your doctors enough time to submit your records. There is nothing you can do but file for reconsideration as soon as you are notified of there decision. With all the documentation my doctors had about my condition there is no doubt in my mind that I would have been approved had SS only alloted all of my doctors enough time to send their records.
 
Good Luck,
 
Sherry 

Tami <ladydubois@...> wrote:
I sent an email to the group earlier of my impending
SSD doctor eval. Doesn't anyone have any input?
Please, I need input on this. Tami

Tami Thompson-Dossey




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#20561 From: "aubtsturgeon" <aubtsturgeon@...>
Date: Wed Feb 28, 2007 2:55 pm
Subject: Report on supplements
aubtsturgeon
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Not sure how much of this information is actually relevant but it
seems there has been a report regarding some supplements impacting on
health and potentially increasing death rate by 5%.
Still early days on case studies I feel but it still makes sense to
post it.

http://www.timesonline.co.uk/tol/life_and_style/health/healthy_eating/
article1449813.ece

Article as follows (same as link):

Vitamin pills commonly taken by millions of people are doing them
more harm than good, an analysis of the evidence has concluded.

Three supplements — vitamins A and E and beta carotene — appear to
increase death rates among those taking them. Vitamin C and selenium
have no effect.

The results, published in The Journal of the American Medical
Association, suggest that money spent on vitamin supplements is
wasted. In response, the British Heart Foundation said people should
not take supplements but should concentrate instead on eating a
healthy diet.

The new study is a meta-analysis; a procedure in which many earlier
studies are collected together. It was carried out by a team led by
Goran Bjelakovic, of Copenhagen University Hospital, and colleagues,
using methods developed by the Cochrane Collaboration, the leading
international group specialising in the analysis of what works in
medicine.

Supporters of vitamin supplements, which are consumed regularly by up
to ten million Britons, believe these can act as antioxidants,
preventing highly active oxygen radicals in the body-damaging
molecules such as cholesterol causing heart disease. The theory
seemed plausible, and some initial trial results appeared to lend it
support. But as better trials were done different results emerged.
The Copenhagen team considered 68 randomised control trials,
involving 232,606 people, and published by October 2005. Of these,
they rate 47 trials as being of the best quality, with the rest more
prone to bias of one sort or another.

Taking only the 47 low-bias trials, involving 180,938 people, they
found that supplements as a whole increased the death rate by 5 per
cent. When the supplements were taken separately, beta carotene
increased death rates by 7 per cent, vitamin A by 16 per cent, and
vitamin E by 4 per cent. Vitamin C gave contradictory results, but
when given singly or in combination with other vitamins in good-
quality trials, increased the death rate by 6 per cent.

Selenium was the only supplement to emerge with any credit. It
appears to cut death rates by 10 per cent when given on its own or
with other supplements in high-quality trials, but the result is not
statistically significant. The team concludes: "Our findings
contradict the findings of observational studies claiming that
antioxidants improve health."

They say there are several possible explanations. One is that
oxidative stress is not the cause of conditions such as heart disease
for which it has been blamed, but may be a consequence of such
conditions.

Alternatively, by eliminating free radicals we may interfere with
essential defensive mechanisms. But the team adds that they examined
only the use of synthetic vitamins, and their findings should not be
translated to fruit and vegetables.

Ann Walker, of the Health Supplements Information Service, a body
funded by the industry, said that the study combined the results of
trials on two different classes of people: those with no known ill-
health, and those already suffering from conditions such as heart
disease. "The results of these mixed-sample metaanalyses are
worthless," she said.

Ellen Mason, a cardiac nurse at the British Heart Foundation,
said: "There are good scientific reasons for believing that
antioxidant supplements might protect against heart disease but a
number of clinical trials have failed to provide any robust evidence
in favour of this"

#20560 From: "Sylvia" <afikaufman1@...>
Date: Wed Feb 28, 2007 2:55 pm
Subject: Re: Life's Twists and Turns
afikaufman
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Oh Suzann, how dreadful for all of you. We hope your daughter will
come through this with flying colors and that you and your husband can
soon put this behind you and get some much needed rest.
Take care of yourselves,
Sylvia

#20559 From: "aubtsturgeon" <aubtsturgeon@...>
Date: Wed Feb 28, 2007 1:14 pm
Subject: Re: Dercum reports by specialists
aubtsturgeon
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Dr Wortham would be good as he understands the disease from a genetic
standpoint and the long term prognosis of it.

I still feel he would be an excellent person for this, as would be Dr
Herbst.

I understand you say they are under a lot of work but alas I really
think these 2 are at the pinnacle of understanding and even working
with cases of DD.
In reality, if we are to ensure a smooth way for all of us to receive
the social benefits and insurances that we are truly entitled to,
then we need to find a way to engage these two.
I appreciate its more a matter of timing but it wouldnt hurt to
discuss this with either, this doesnt commit them to any actions.


--- In Dercums_Disease@yahoogroups.com, "Cynthia"
<c_prentice2003@...> wrote:
>
> Hi everybody,
>
> I do not get much time to post right now - life has been taking
over
> myresearch and everything else as well.
>
> However, I just wanted to say that I do not think that Dr. Wortham
> would even respond to such a request as he is a Cancer specialist
and
> only looked at DD because of the fact that our tumours do not
become
> cancerous. Also being a British National Health Doctor, he probably
> would not be allowed to do so.
>
> Then - as for Dr. Herbst, I feel it woudl be totally unfair to ask
> her to do something like this for the moment. She is up to her neck
> in research for us already, her personal life is practically on
hold
> since she met us all and she also works as a Hospital Doctor as
> her "proper" job........ Honestly guys, I do not think it would be
> fair at all. She has already done so much for us.
>
>
> Please do not think that I do not think it is a good idea - it is.
We
> just need to find someone who has less on their plates - perhaps
> through friends and relations?
>
> I do not have any doctors in my family - does anybody else?
>
> I hope someone can help with this idea - it is a good one!
>
> Cynthia
>
> --- In Dercums_Disease@yahoogroups.com, "aubtsturgeon"
> <aubtsturgeon@> wrote:
> >
> > Hi all,
> > I am sure we are all experiencing problems in receiving insurance
> and
> > social benefits when this illness stops us working.
> > Part of the problem seems to relate to the aspect of DD being
> chronic,
> > progressive and actually debilitating for us.
> > In fact I would say those who stopped work did so before they
found
> out
> > they had DD.
> >
> > With this in mind do you think it is possible to identify a few
> > specialists who we could arrange to create general reports to
> assist
> > with the claim, and where necessary individual reports.
> >
> > I know an incentive would probably have to be offered in terms of
> > payment directly or to a charity for their time and consideration
> in
> > this matter.
> >
> > Two spring to mind who may be able to help; Dr Herbst and Dr
> Wortham.
> >
> > So what is peoples views on this?
> >
>

#20558 From: Suzann Cheney <scheney@...>
Date: Wed Feb 28, 2007 12:45 pm
Subject: Life's Twists and Turns
suzanncheney
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Hi Everyone,
 
Thought I should explain my absence from the group if any of you are missing me. 
I'm going through a really rough time right now.  I've been out of work (ordered by my doctor for one week and then on Monday I was ordered out for two more weeks).  And have seen a Neurologists, etc. to try to explain my memory lapses which are causing me problems at work and the Anxiety that is uncontrollable and continuing to exhaserbate the situation.  Will need to see a Psycologist I guess to handle the anxiety issues and am looking for one in the area so that I can hopefully go back to work soon.
 
During this past weekend my youngest daughter had a cat scratch her in the eyeball (well scratch is putting it mildly - it tore her eyeball and the claw cut through all the layers of the eye about 1/2 cm long).  We had to rush her to the hospital only to be sent from there on Saturday evening to the eye doctor 35 miles away, and from there on a mad dash to Burlington, Vermont.  We left Massena (the eye doctors) at 9 pm Saturday night and arrived in Burlington, VT at 11:45 pm.  It's normally a 3 to 3 1/2 hour drive depending on traffic and weather, so that shows you how urgent it was that we get there quickly.  My husband drove on back roads of speeds up to 75 & 80 miles per hour.  I white knuckled it the whole way, while worrying about my daughter in the back see and whether or not she would lose her eye sight the whole time.  When we arrived we had beat the surgeon, and had to wait about another hour.  She was taken into surgery at 2 am and came out at 4 am.  The doctor was very concerned about the damage to her Retna, but had a really hopeful attitude that it would maybe be ok, but with all the blood behind the eye was not certain.  Duane and I stayed with Cassandra in recovery until 5:30 am, at which time they still did not have  a bed for her, and we were told to go and find a hotel to get a few hours of sleep.  At 6:30 am, we found one and settled in until 10:30 am.  My husband fell asleep right away, but my brain would not shut down and I ended up with 2 1/2 hours of sleep in a 48 hour period to function on.  We returned to the hospital and waited to see the doctor at 2 pm that afternoon.  He released us at 4 pm and then we had to wait for the nurses to bring paperwork to close the deal, with appointments to return Tuesday (which was yesterday now).  We got home at 9:30 pm Sunday night.  On Monday she had to go have a tetnus shot and we had to drive to Massena to followup with the eye doctor again.  Yesterday we were back in Burlington to see the surgeon and then a Retna Specialist.  All are really encouraged that things are looking pretty positive given the seriousness of the injury, but she is by no means out of the woods.  The fear of infection still lingers and the fact that the Retna specialist still cannot completely determine if the Retna took a hit with the claw due to the blood still behind the eye, so we must not continue to watch for infection, shadows in her vision, pain, etc.  if any of these develop we're on a fast trip back to Burlington for more surgery.  We follow up in two weeks with the Retna Specialist again, and hopefully if infection hasn't set in by that time, he'll be able to see more of the retna by then and we will know for certain if she is out of the woods or not.
It has been a very harrowing exerpience.
 

 I'm trying to catch up on all the posts during my absence, so I hope you are all doing ok and that I haven't missed something catastrophic for any of you.  If so, please know that I hope all will be well for you soon.
 
Take care everyone.
 
Suzann Cheney



#20557 From: "Cynthia" <c_prentice2003@...>
Date: Wed Feb 28, 2007 12:38 pm
Subject: Re: Dercum reports by specialists
c_prentice2003
Offline Offline
Send Email Send Email
 
Hi,

Yes Dr. Herbst has seen a lot of us now - but she is not seeing us as
patients but as research subjects which is why it is important that
your PCP knows as much as possible about DD and the ways to treat it.
I am sure that when she publishes her findings - which I think might
be quite soon, we will all have quite conclusive evidence to take to
our doctors to help them understand what is happening inside our
bodies.

Patience.......

Cynthia--- In Dercums_Disease@yahoogroups.com, chickie456789@...
wrote:
>
> hi everyone,
>
> i have a little experience with the ssi/disability thing. my  b/f
was trying
> to get it three years before he died. they never resolved his
case. they
> would send him a form for his doctor to fill out every couple
months,  but never
> got a resolution.  has Dr H seen any of you? actually  done a
physical exam?
> that is what ssi/disability requires. they want  records from a doc
that is
> actually treating you. maybe when it actually  gets to the hearing
part, any
> research would be helpful. but again, that should  come from your
primary
> physician, and any specialists that you are seeing.
>
>
> Mary Lou
>
> <BR><BR><BR>**************************************<BR> AOL now
offers free
> email to everyone.  Find out more about what's free from AOL at
> http://www.aol.com.
>

#20556 From: chickie456789@...
Date: Wed Feb 28, 2007 5:44 am
Subject: Re: Re: its me jodith
cherrychicklit
Offline Offline
Send Email Send Email
 
 
 
hello,
 
i'm a left sided lipoma queen also. <doing the miss america wave> and when they have no where else to go, they ditch the left side and roam freely...lol..
 
 
Mary Lou




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#20555 From: chickie456789@...
Date: Wed Feb 28, 2007 5:11 am
Subject: Re: Re: Dercum reports by specialists
cherrychicklit
Offline Offline
Send Email Send Email
 
hi everyone,
 
i have a little experience with the ssi/disability thing. my b/f was trying to get it three years before he died. they never resolved his case. they would send him a form for his doctor to fill out every couple months, but never got a resolution.  has Dr H seen any of you? actually done a physical exam? that is what ssi/disability requires. they want records from a doc that is actually treating you. maybe when it actually gets to the hearing part, any research would be helpful. but again, that should come from your primary physician, and any specialists that you are seeing.
 
 
Mary Lou
 




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#20554 From: "Cynthia" <c_prentice2003@...>
Date: Wed Feb 28, 2007 8:32 am
Subject: Re: Dercum reports by specialists
c_prentice2003
Offline Offline
Send Email Send Email
 
Hi everybody,

I do not get much time to post right now - life has been taking over
myresearch and everything else as well.

However, I just wanted to say that I do not think that Dr. Wortham
would even respond to such a request as he is a Cancer specialist and
only looked at DD because of the fact that our tumours do not become
cancerous. Also being a British National Health Doctor, he probably
would not be allowed to do so.

Then - as for Dr. Herbst, I feel it woudl be totally unfair to ask
her to do something like this for the moment. She is up to her neck
in research for us already, her personal life is practically on hold
since she met us all and she also works as a Hospital Doctor as
her "proper" job........ Honestly guys, I do not think it would be
fair at all. She has already done so much for us.


Please do not think that I do not think it is a good idea - it is. We
just need to find someone who has less on their plates - perhaps
through friends and relations?

I do not have any doctors in my family - does anybody else?

I hope someone can help with this idea - it is a good one!

Cynthia

--- In Dercums_Disease@yahoogroups.com, "aubtsturgeon"
<aubtsturgeon@...> wrote:
>
> Hi all,
> I am sure we are all experiencing problems in receiving insurance
and
> social benefits when this illness stops us working.
> Part of the problem seems to relate to the aspect of DD being
chronic,
> progressive and actually debilitating for us.
> In fact I would say those who stopped work did so before they found
out
> they had DD.
>
> With this in mind do you think it is possible to identify a few
> specialists who we could arrange to create general reports to
assist
> with the claim, and where necessary individual reports.
>
> I know an incentive would probably have to be offered in terms of
> payment directly or to a charity for their time and consideration
in
> this matter.
>
> Two spring to mind who may be able to help; Dr Herbst and Dr
Wortham.
>
> So what is peoples views on this?
>

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