My Goodness Suzann!
What a nightmare!
I hope your daughter is doing better and I am praying
for her full recovery.
Hugs,
Pamela





________________________________________________________________________________\
____
Any questions? Get answers on any topic at www.Answers.yahoo.com.  Try it now.

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

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

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

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

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

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

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

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

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.
Ask your question on www.Answers.yahoo.com

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)

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)

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)

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

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

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

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"

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

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?
> >
>

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.
>

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?
>