Great article thats interesting and points out 3 questions to help engage your Dr.

This article was in The Times, UK publication:

Enjoy the reading, hope it is of use to you Zer.
Regards. Aub
Article May 1st 2007:

As a resident in internal medicine at the Massachusetts General Hospital, Jerome Groopman regularly saw a middle-aged woman with seemingly endless complaints. One day, she had a new one – a pain in her upper chest. He concluded, quite quickly, that she had indigestion, so he prescribed antacids and sent her on her way.

"I became irritated with her. Her voice started to sound like a nail scratching a chalk board," he recalls. Several weeks later Groopman was urgently paged to ER. His patient had a tear of the larger artery that carries blood from the heart to the rest of the body. She died.

"People said that she probably would not have survived surgery even had I diagnosed it correctly, but the truth is that there was a chance she could have lived. I have never forgotten that, nor forgiven myself."

Dr Groopman is a haematologist-oncologist at Harvard Medical School and is one of America's most eminent medical figures. Yet it is only now, 35 years after his fateful misdiagnosis, that he understands what he calls "its genesis".

In a new book, called How Doctors Think, he spoke to hundreds of doctors, across a wide range of practices from Dallas to Canada, and asked them how, when faced with patients' problems, they came to the conclusions they did. What he discovered surprised him. They didn't know. And they had never stopped to ask.

And yet, Groopman argues, if doctors could be encouraged to analyse why they make the decisions they do, both the emotional and the financial cost of millions of misdiagnoses a year couldbe altered drastically. Crucially, the patient's role is key. By learning to read a doctor's physical and vocal language, and by asking some very simple questions, we can help our doctor to help ourselves.

"Never, in 35 years of medicine, have I heard one word about thinking patterns or cognitive psychology. And yet, not one doctor who I spoke to understood how and when their minds worked successfully, or not," he says, speaking from his office in Boston.

His first observation is that, more often than not, doctors make up their mind too quickly. He cites research showing that, on average, a doctor will interrupt his or her patient within 18 seconds of them telling their story – often signalling that they have already reached their diagnosis.

"The human mind relies on shortcuts," he explains. "Often these can work well and, because doctors work under very tight time pressures, with high levels of uncertainty and limited information, we need them. But the stakes are high, and if it goes wrong, the results can be catastrophic." To illustrate his point, Groopman points to the work that Amos Tversky and Daniel Khaneman, psychologists from the Hebrew University in Jerusalem, carried out two decades ago.

(Kahneman won the Nobel Prize in economics in 2002). Together, they illustrated how certain patterns of thinking cause irrational decisions in the market-place – a pattern which can, says Groopman, be applied universally.

"They showed that when dealing with uncertainty, we tend to anchor on the very first piece of data presented to us. In a doctor's case, this might be notes from a previous doctor, or results of a lab test, but crucially, it is that first piece of information that you run with." This is especially likely considering younger doctors' reliance (on both sides of the Atlantic) on what he calls "cookbook recipes" – such as the algorithm.

"When I started out in medicine, the doctor's focus was on the bond between himself and the patient, with the latter's life story being as important as his or her reported illness. This had obvious positives, but also negatives – such as the lack of scientific rigour. As a reaction, there was a movement to try and standardise care. Algorithms, or decision trees, were introduced, whereby a doctor was told to follow cues in order to come to the correct diagnosis, and given related treatment guidelines. The benefit of it is that it relies on clinical data, which is important. But the problem is that unless you have identified correctly what the key symptoms are, the algorithm is useless."

Groopman believes that a return to a focus on the doctor/patient bond is not only a big battle – but an unrealistic one, given government targets and the length of waiting lists. Which is why, he says, the patient needs to help the doctor out.

"Had my Massachusetts patient known what to look for, she would have pinpointed certain traits – I was cutting her off short, and adopting an irritated posture. This is the first red flag. The reaction from a patient should be to say, `I have a sense we are not communicating well.' At heart, most doctors want to do the right thing, and should respond well to any attempt to maintain a good relationship."

All well and good, if it is Dr Groopman sitting on the other side of the desk. But what about the overworked local GP, who offers a withering look when you explain, yet again, that you are sure that your heartburn is "not normal"?

"If they do not respond to an attempt to communicate, you need to seek another doctor, immediately. Despite research showing that most patients pick up on the doctor's negativity, few understand its effect on their health, and rarely change doctors. Instead, they blame themselves for complaining (most especially in Britain, I suspect). But when I asked the hundreds of doctors I interviewed what they would do if they, as patients, perceived a negative attitude from their doctor, every single one flatly said he or she would find another doctor."

Groopman agrees that we are led to believe that doctors are right – a belief to which many themselves subscribe. "That is why the kind of questioning I suggest can be quite constructive."

If your symptom persists or the treatment is not working, the first thing you should do is repeat your story, even if you are not asked to, he says. "Sometimes, he or she will hear something they didn't hear the first time round. Sometimes you might say something you had omitted. Think of it as a crime scene: you and your doctor are looking for new ways to prove you are innocent."

The next thing patients should do is express their deepest fears. "Sometimes what you are feeling is related to what you are fearing, but the fear is so intense you are reluctant to express it, or because you think you might jinx yourself. The doctor needs to hear that. He can explain very quickly why your abdominal pain is not colon cancer, and this in turn has been proven to actually relieve the physical symptoms, which can be caused by the burden of anxiety."

For three decades as a practising doctor, Dr Groopman concludes, he looked to traditional sources of information to assist him in his thinking – textbooks, medical journals, mentors and colleagues. It is only now, at the age of 55, that he has realised he has another vital partner who, by posing a few pertinent questions, could help to protect him from the "cascade of medical pitfalls that cause misguided care". That partner is his patient.

Three vital questions

Groopman says every patient should learn three "cardinal questions" to ask their doctor:

1. What else could it be? is a key safeguard against against errors in thinking, and forces the doctor to examine his initial diagnosis. Did he throw the anchor to the wrong port, so to speak? This question will help him to start afresh.

2. Is there anything that doesn't fit? should be your next question. There is a cognitive error called confirmation bias, when a person, a doctor in this case, selectively draws on the data that confirm a preconceived idea. When a patient asked the first question, the doctor might have discounted any information that contradicted his initial theory. So by asking whether there is anything that doesn't fit, or is contradictory, it causes him or her to pause and let his mind roam more broadly.

3. Do I have more than one problem? should be your third question. In medical school, doctors are taught to use an ancient logic called Ockham's razor – an elegant philosophical principle, which dictates that you should always adopt a single explanation for everything. This is not always the case in medicine. If you have someone who has heart disease, diabetes and kidney failure, is on medication, and has a fever, having recently travelled to Spain, there might be more than one thing going on. This question will prompt your doctor to consider this.

My swollen hand – and the three doctors who hadn't a clue

Dr Terry Light, of Loyola University in Chicago, is a hand surgeon. When I spoke to him in the autumn of 2005, I took the opportunity to present the case of a patient with debilitating pain and swelling in his right hand. Over three years, the patient had consulted six hand surgeons and got four different opinions about what was wrong. I was that patient.

The trouble with my hand can be traced to my never having learnt to type. Ten years ago, I bought my first laptop and banged clumsily at the keyboard. I soon developed a roaring case of tendonitis. Then, one day, a woman was making her way toward the elevator. I was already inside and, reflexively, I extended my right hand, but it was too late. The elevator briefly closed on my wrist.

A few weeks after the incident, I struggled to open the lid of a bottle of fruit juice. Excruciating pain erupted in my right wrist. The hand became hot, red, and swollen. I couldn't move it. I took an antiinflammatory drug, and I went for X-rays and an MRI scan, which revealed cysts, essentially fluid-filled holes, within the scaphoid and lunate, two small bones on the thumb side of the wrist.

The first hand surgeon I consulted I will call Dr A. He told me that many people have cysts in their bones and suggested that I be splinted for a month. At the end of four weeks, I was back in his clinic. I had used the splint diligently, but I [still] had pain in my wrist. Dr A told me to see how my wrist felt when I used it out of the splint. I gradually started doing things with my right hand.

Then one day, I felt my hand begin to heat up. Within minutes it was swollen and red.

A year after I first consulted him, Dr A said, "I think you have developed a hyperreactive synovium." He suggested a surgical procedure to strip away all of it. Dr A had come to the end of his thinking. He invented something to respond to my plaintive questioning and suggested an operation that could be damaging. It was time to seek another opinion.

Dr B said that I needed three surgeries. I was increasingly frustrated and desperate for a solution, but leery of the idea of undergoing three operations.

I had to pull strings to see Dr C, one of the most renowned hand surgeons in the United States. He diagnosed pseudo-gout. "We need to do an arthroscopy," he said. This meant inserting an instrument like a flexible telescope into my wrist in order to see the actual bones and ligaments.

"I wonder if you could tell me what you expect to find with the arthroscopy," I asked. "I'll figure it out when I get in there," he said. I felt dazed. Dr C had offered a diagnosis that, while not invented, like Dr A's, was nevertheless inventive.

Dr D surprised me by examining not only my right hand but also my left. Dr D's scenario made sense. [He] proposed taking bone grafts from my hip, filling in the cysts, and repairing the ligament. I asked him how many times he had performed the operation. He paused and said, "Once."

"That's the struggle when patients are having pain," Dr Light said after hearing Dr D's thoughts. "You can see many things on an MRI, but nothing that's clearly responsible for the symptoms."

The key, Dr Light continued, is for "everything to add up. Picking up a scalpel and cutting can be just the wrong thing." This, though, was what Drs A, B, and C, without recognising a coherent and consistent pattern, were set to do.

After several weeks of considering Dr D's advice, and a similar diagnosis from a hand surgeon who is a friend, I learnt that Dr E had performed repairs of this type scores of times. I met Dr E. He was focused, saying that the arthroscopy and the surgery would be performed at one sitting. Overall, the surgery was a success. After five months, my wrist was about 80 per cent normal.

This was another message that Dr Light believes surgeons should communicate. "Nothing that you do in surgery is perfect. Everything is a compromise." Like most patients I expected to be restored to pristine condition. More often than not, that is unrealistic. While you cannot predict a specific outcome, Dr Light emphasised, you need to not paint too rosy a scenario. "You don't want to leave people disappointed."

Dr Light was revealing the kind of thinking that the most seasoned and expert doctors display: they think in sync with the patient. The patient should be helped to think in sync with the doctors, too.

— Extracted from How Doctors Think by Jerome Groopman, published by Houghton Mifflin; available from Times BooksFirst for Ł18.99 incl p&p: 0870 1608080; timesonline.co.uk/booksfirst

Hey Will,

What a great guy!  Your support is always so encouraging!  Thanks &
Hugs, Kristi


--- In Dercums_Disease@yahoogroups.com, "Will I Am" <waksmf@...> wrote:
>
> Jackie - I did not mean to give that impression, and I am sorry if I
did.  I understand the purpose of the women's group, and I agree that
there is plenty of room to talk about how Dercum's has affected all
aspects of our lives, and the more we discuss it, and the more people
learn, the more progress we make.  I did not mean to insult or offend.
Smiles, everyone, smiles!  Will - I - Am
>

Hi Zer,

the problem is it can be very hit and miss scanning for Dercum related
tumors due to what makes them - Adipose tissue.

Is there any chance you can get to see a very very good dermatologist?
They are experts in feeling for the unusual kind of lumps, whether
encapsulated or diffused and would be the best bet I feel in 1st step.

Sorry I canot suggest much more but I hope you manage to find someone
who can help!
Aubs


--- In Dercums_Disease@yahoogroups.com, "zer92780" <not4zermail@...>
wrote:
>
> I am starting at my HMO with a new MD. I am hopeful. She was
> recommended by someone I met in the parking lot one day, after
> seeing an MD who has not helped me since I went in August to
> ask about extreme inflammation in my left hip that was affecting
> my ability to sit/rise without assistance. That's scary, a loss of
> mobility. He offered little help and was not open to talking with
> Dr.Herbst or in exploring a possible Dercum's dx. So I am now
> starting to see a different MD. I am hopeful of finding a valid dx
> for what I take to be a flare-up of tissue in my left hip, same hip
> that carries a sizeable saddlebag of fat that hangs and swings
> independently outside my left hip/thigh. Is it a lipoma, a fatty
> tumor? I'm not sure. It has a woody texture and I massage it to
> loosen up the fat, thinking to create circulation that might carry
> away some of the tissue or fluid or something. Am I dreaming?
> Probably. MD says surgery is a massive risk at my age/size (63,
> 400#) and I am aware that many who have surgery experience a
> regrowth of the tumors. That said, I am not in a position to add to
> my mobility issues by having major surgery and recuperation on
> my own. That is beyond my ability to manage. Life is difficult as
> is, having to walk with a cane and with pain in the left hip that is a
> barrier to sleep. I spend most of my time in bed as is. That's not
> a life that I want to have for the rest of my days. So I am hopeful
> that this new MD and I can come up with some alternatives that
> will help me manage. She says the Oct. xray does not show soft
> tissue, only bone. So what should I ask for? An MRI? -Zer
>
> --- In Dercums_Disease#22156, "Sylvia" .....
> > Hey girl, we understand......
> > --- In Dercums_Disease, <we_r_blessed@> wrote:
> > > I get so apprehensive every time I go see a new Doctor.....
>

My reply to people now when they say BUt you look so great.. I tell them if you turn me insisde out you aould have nightmares forever... LOL

I'm just so depressed right now. I'm so tired of people saying, "But
you look great!" I'm hiding behind makeup. I wear my sun glasses
all the time. I'm just wore out.

--- In Dercums_Disease@yahoogroups.com, "Sylvia" <afikaufman1@...>
wrote:
>
> Hey girl, we understand. Those doctors seem to do more harm than
good
> sometimes but you are seeing one that is experienced with DD. You
know
> this is a rare find so YES, be happy.
> We are keeping our fingers crossed for you and sending happy
thoughts
> and gentle hugs your way.
> Take care,
> Sylvia
>
>
> --- In Dercums_Disease@yahoogroups.com, "we_r_blessed"
> <we_r_blessed@> wrote:
> >
> > I get so apprehensive every time I go see a new Doctor. I just
don't
> > trust them anymore. I have an appointment next week at UC San
> > Francisco, and I have to be honest and say that I'm almost
dredding
> > it. I should be happy since this Doctor is experienced with DD?
> >
> > I'm on disability now. I went to my work today just to say hi,
and I
> > left so depressed :( I ended up coming home and laying on my
heating
> > pad for an hour. I'm so tired all the time.
> >
>

I am starting at my HMO with a new MD.  I am hopeful.  She was
recommended by someone I met in the parking lot one day, after
seeing an MD who has not helped me since I went in August to
ask about extreme inflammation in my left hip that was affecting
my ability to sit/rise without assistance.  That's scary, a loss of
mobility.  He offered little help and was not open to talking with
Dr.Herbst or in exploring a possible Dercum's dx.  So I am now
starting to see a different MD.  I am hopeful of finding a valid dx
for what I take to be a flare-up of tissue in my left hip, same hip
that carries a sizeable saddlebag of fat that hangs and swings
independently outside my left hip/thigh.  Is it a lipoma, a fatty
tumor?  I'm not sure.  It has a woody texture and I massage it to
loosen up the fat, thinking to create circulation that might carry
away some of the tissue or fluid or something.  Am I dreaming?
Probably.  MD says surgery is a massive risk at my age/size (63,
400#) and I am aware that many who have surgery experience a
regrowth of the tumors.  That said, I am not in a position to add to
my mobility issues by having major surgery and recuperation on
my own.  That is beyond my ability to manage.  Life is difficult as
is, having to walk with a cane and with pain in the left hip that is a
barrier to sleep.  I spend most of my time in bed as is.  That's not
a life that I want to have for the rest of my days.  So I am hopeful
that this new MD and I can come up with some alternatives that
will help me manage.  She says the Oct. xray does not show soft
tissue, only bone.  So what should I ask for?  An MRI?  -Zer

--- In Dercums_Disease#22156, "Sylvia" .....
> Hey girl, we understand......
> --- In Dercums_Disease, <we_r_blessed@> wrote:
> > I get so apprehensive every time I go see a new Doctor.....

Thankyou Jackie:-)
Kay~K.
----- Original Message -----
From: "Jackie Hanan" <rubyjax@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 4:28 PM
Subject: RE: [Dercums_Disease] Kay,......OT


> Sure Kay..if you go to Yahoo groups and type in dercumsdiseasefor_women my
> group is listed right under this group. I just went there and was able to
> pull it up just by typing in Dercums disease in the search health groups.
> That will be great if you want to join. :-)
> Hugs, Jackie
>
>
>
> -----Original Message-----
> From: Dercums_Disease@yahoogroups.com
> [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of IslandRetreat
> Sent: Sunday, April 29, 2007 9:11 PM
> To: Dercums_Disease@yahoogroups.com
> Subject: Re: [Dercums_Disease] Correction.........[For the mods]
>
> Hi there Jackie...
> may I have the addy for the group:-)
> I cannot find it.
> To :-.....Myoken1@...
> Cheers!
> Kay~K.
>
>

Thankyou Jackie..and yes life can be good;-)
So glad that you can relate to the LDN use..terrific!
Certainly low dose naltrexone is not mainstream medicine.
Cheers to you Jackie.
Kay~K.
----- Original Message -----
From: "Jackie Hanan" <rubyjax@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 4:37 PM
Subject: RE: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease
from Kay~K.


> Hi Kay and Aub,..from what I have heard in order to use LDN you first have
> to go off all pain killers for about 3 weeks I think before you can use
> it.
> I have friends w/MS that are on it, and they are getting good results. But
> just like you said Kay there are some Dr's who are not prescribing because
> they don't either know about the low dose effects, or they've never heard
> of
> using it for other illnesses.
> Kay that is fantastic it has worked so well for you. taking your dogs into
> the sea must be delightful.
> Smiles, Jackie :-)
>
>
>
>
> The other medication I am using with success to give me fluidity of
> limbs..and movement without pain or restriction is Low Dose
> Naltrexone...not
>
> to be confused with the high dose given to alchoholics and drug addicts.
> This is how it came about;-
> My doctor was oversease ( USA) at a drug conference...looking at
> alternative, homeopathic, and new uses for old drugs..it was in the USA at
> the conference that he heard about Low Dose Naltrexone....the dosage being
> 3-5mg for males..4.5 mg for females...it was being used with great success
> for MS sufferers...and also for autism and chrons disease...and many
> more,,,it DOES NOT cure any disease..it simply gies much more ease of
> fluidity, and cuts down on the bad effects of disease..I can now walk for
> quite a way..I now do at least a 1/2 kilometre morning nad 3/4 kilometre
> evening..I  take my dogs into the sea at least once a week..I have fun!! i
> could not walk without aids for 3 years prior to taking the drug...I am
> doing things that were too long denied me with this insidious disease..I
> am
> a great addy for the drug..LOL...but each to their own thing.
> Low Dose Naltrexone works on the good endorphins...I take it in the
> evening
> before bed..so that it can work on the good endorphins between 2 am and 4
> am..which is when they are most active..it gives the good endorphins a
> boost..so that it helps the immune system.
> Sometimes I go for a week taking it during the day..gives my day a real
> punch! And I love that:-))))))))
> Here are some links that will describe the drug for you Aub...it may be of
> use..I don,t know..everyone is an indivdual with indivdual needs...the
> mainstream of doctors does not want to know about the drug..but there is a
> group on Yahoo where the group owner has the names and phone numbers of
> Doctors in the USA who will prescribe the drug...and also lists of
> Compounding Chemists who dispense the drug...it has to be a compounded Low
> Dose Naltrexone..as otherwise if made with fillers in the capsules it does
> not work so the story goes..I have  compounding chemists in 2 other states
> that dispenses it for Aussies when prescribed.
> I should say that there is nothing illegal about the drug...just a
> different
>
> take on meds;-)
> Okay I,m off to make up some curry and onion and some tomatoe and parsley
> sausages,,then I,m off to the walking tracks with my 3 french bulldogs..my
> life is good...
> And I should say Aub that my secret to a good state of mind and is really
> simple...a litle personal..but simple..lol...I am a committed buddhist and
> during my schooling about buddhism and before I took my vows as a buddhist
> and boddisattva ,my Lama and some monk friends etc..gave me some great
> teaching on meditation and  the ways.of buddhist meditation..and just in
> case you think.."oh no..another  buddhist nut..."..lol....
> I do not push the buddhist view on things ;-))Anyone can do buddhist
> meditation..my favorite is 'sky gazing'...;)
> But again..that is another episode...
> Cheers Aub!
> Kay~K.
>
>
>
> ----- Original Message -----
> From: "aubtsturgeon" <aubtsturgeon@...>
> To: <Dercums_Disease@yahoogroups.com>
> Sent: Monday, April 30, 2007 1:36 AM
> Subject: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease from
> Kay~K.
>
>
>>
>> Kay~K,
>> this is truly a story of coping with Dercums if I have ever seen one.
>> Would you be happy to say what medicines you take, and how you built the
>> mental attitude to cope as this could help many.
>> Thanks for an in-depth post on your experiences.
>>
>> Aubs
>>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>

Thankyou Dorrit..like you, that is what I beleive...
thanks for being  such a good friend at this time..
Cheers!
Kay~K.
----- Original Message -----
From: "Dorrit Hvam" <fiori68@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 7:32 AM
Subject: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease from
Kay~K.


> Dear kay
> You are one VERY BRAVE lady  !!!
> Very brave to go public with all of this, and very brave for all that
> you have been through, and still have a positive attitude towards
> life.
> I do hope that you will soon get this new operation over with, so you
> can enjoy life again in spite of what DD has done to you.
> I am also happy that youi warn people against believing that DD can
> be "removed". In my opinion it's settled in all of our cells, and
> will keep coming back again and again, unless someone finds out what
> is wrong with us, and how to keep the growths down.
>
> My very best wishes to you!
>
> Dorrit
>
>
> --- In Dercums_Disease@yahoogroups.com, "IslandRetreat" <Myoken1@...>
> wrote:
>>
>> Hello Will, hello Sylvia..thankyou for your advice.
>> And hello everyone:-)
>>
>> I am a little foggy as to who started the email thread regarding DD
> finding
>> it,s
>> way to internal organs...but will attempt to give my findings
> anyway..can't
>> keep an old dog down for long..lol.
>>
>> It has been found and documented that I unfortunately have DD
> angiolipomas
>> and lipomas growing and flourishing internally(  as well as a
> multitude of
>> external ones) .....some years back..maybe
>> just a couple ...I gave Dora the info on these...and I believe it
> was used
>> to help towards solving the mysteries of Dercums Disease...so "HI"
> to Dora
>> if you are reading dear lady...it has in turn helped the UK
> research.,,which
>> in turn was  given to Dr Herbst on request.
>>
>> Okay.... when just a young thing..I,m rather decrepit now,,,I had
> enormous
>> trouble with pain in the breast area ...it was simply horrid...also
> the
>> breast area was extremely swollen and completely filled
> with 'lumps'...this
>> was of course exacerbated during my  6 pregnancies...( 5 of my
> children have
>> DD ) and breast feeding them all.
>>
>> When in my early 30,s and finished child bearing...I went to my GP
> of the
>> time..and asked him if there was anything that could be done about
> the
>> 'lumps' in my breasts...as he had always prescribed pain
> medications , but
>> the growths were now disfiguring me and making my breasts
> constantly ache to
>> the point of distraction big time.
>> He sat me down for a 'heart to heart' and explained to me that the
> lumps
>> were part of DD ..which he had seen before in his home country
> Russia..and
>> also which had been diagnosed in my case in 1957.when I was still a
> young
>> thing...he then explained how hard it was to tell if some  lumps
> were
>> cancerous in my case as it would not be nigh on impossible to
> biopsy all of
>> the lumps...as my breasts were now just a conglomeration of lumps,
> lumps,
>> lumps.
>> He suggested to me that the only way to rid myself of the pain was
> to have a
>> double mastectomy of both breasts...oh dear....
>> Well I went home and thought about this for 6 months or so....then
> I could
>> not bear the pain anymore...so I went back to him and he arrangesd
> for the
>> double mastectomy ..remember this was some years ago, I am in my
> mid sixties
>> now...and mastectomys were done a lot more often in those days..and
> always
>> the whole breast/breasts...and lymph glands..and so it was
> done...ah! no
>> more pain ...but a huge battle to overcome the physcological
> female 'missing
>> feminine parts'...
>> Then 5 years later after my doctor who always I think felt for me
> regarding
>> my situation ( breastless lol)...decided that I should go see a
> very fine
>> professor of plastic surgery in our main capital city..so off I
>> trotted...;_)
>> This professor decided that he could take a large part of my tummy
> muscle
>> and some fat too..and transplant it in the area where my breasts
> used to
>> be...and also fashion them etc..
>> So it was done...and also my chest wall was scraped....as DD was
> clinging to
>> it ...but alas I could no longer raise myself up from  a laying
> down
>> position...tummy muscle gone for the most part.
>> Unfortunately infection set in to the left side , and it had to be
>> mastectomied once more..argh! ...but there is a little left;_)
>> So we come to the present day.....my breasts are now exactly as
> they were
>> when I was in my early 30,s...very painful..and filled once more
> with
>> DD.......you see the DD had obviously been in the tissue either
> from the
>> tummy perhaps..or ...my current GP,s theory is that some DD was
> left on the
>> chest wall and breastbone etc...we  don,t really know...but I,m
> surely not
>> going down that road of mastectomies again..it is not worth it..so
> please
>> anyone who is contemplating haveing a mastectomy...think long and
> hard
>> before you do..as it is a given that it will all come back..mine
> did...and
>> the pain is still there.
>>
>> Okay on to more DD in internal organs chat :-)
>>
>> Ever since my last child was born ( number 6)  in 1972..I have had
>> incontinenece problems...argh!.
>> So........off to specialists, urologists etc...to see what can be
> done..
>> Not much really...my uterus is completely filled with DD
> growths..DD tumours
>> they are called here....
>> How were they seen..? by giving me extensive internal ultrasounds
> with an
>> ultrasonic wand inserted...well it seems there is always a way eh?
> just like
>> they found the growths in my breasts and on my chest wall..they had
> to be
>> seen in reality...and it seems even a local normal internal exam
> sees them
>> rearing their ugly heads:-) ..and pictorially on the ultrasounds.
>>
>> More?...keep reading...lol:-)
>>
>> 2 years or so ago whilst having an abdominal ultrasound due slight
>> discomfort and and swelling of the abdomen...they found an
> abdominal aortic
>> aneurysm...not good...so began a series of angiograms to view the
> aneurysm
>> clearly..and during a visit to my specialist vascular/endovascular
> surgeon
>> saw what looked  like white shadows on the screens ( like large
> tv;s ) in
>> the operating theatre...he told me to take a look..and as I was
> only under a
>> local anesthetic whilst he was putting a stents in my illiac and
> femoral
>> arteries..which he had discovered when I lost the use of my left
> leg to
>> extreme pain..which proved to be blocked arteries ..( femoral and
>> illiac)...I looked and they were all the world like little white '
> mini
>> clouds'..to my eye...I asked if he thought they were DD
>> lipomas/angiolipomas..he said " I don,t like to say as I know
> nothing about
>> your DD at the present time...but I certainly cannot dispute
> it..."they
>> showed up throughout the areas around my aorta area,  kidney and
> liver area.
>> Just recently I had to go for CT Scans before  another   angiogram
> and
>> possible angioplasty...there were definite angiolipomas on my
> kidneys and
>> liver..very visible on the CT....
>> Okay on to my esophagus..are you still reading??:-)))
>> I had been having trouble with an annoying gaspy business with my
> throat..so
>> it was decided that I should have an a esophogoscopy..and lo and
> behold
>> angiolipomas..they took them out ..and they were real little
> beasties..they
>> had little roots and all;_)...so I have been fairly good throat
> wise for a
>> while now..but am starting to have a few swallowing problems once
> more...so
>> at least my current Gp,s  know what it is and something can be
> done...
>>
>> Okey doke...onto the bowel...:-)
>> I had to have a colonoscopy as I was having uncomfortable
> heartburn and
>> reflux problems..and there was suspicion of an ulcer...and yes they
> found a
>> duodenal ulcer...but also found angiolpomas attatched to my bowel
> and lower
>> intestine..they could see it with  the little camera attatched to
> the
>> colonoscopy tube...so the nipped a few off...and yes they were
>> angiolpomas..and lipomas too.
>>
>> Now I,ll close this email of mine..it is rather getting to book
> size...so
>> sorry folks.
>>
>> The main thrust of this email in my mind is to let the ladies know
> that it
>> is a MISTAKE  to have a mastecomy if your breasts are painful..as
> it will
>> still come back fourfold..mine has..and these days  is just a
> painful as it
>> was before the surgery..PLEASE DON'T DO IT.
>>
>> At this time my GP has now got me on excellent medication for the
> pain of
>> DD..as I had got to the stage that I would not take anything.,.,I
> needed to
>> fight it myself ...that is fodder for  another email ..lol
>> Now I am waiting at this time for another angiogram to map the path
> of my
>> abdominal aortic aneurysm and my blocked renal artery to the left
> kidney..my
>> aneurysm is at danger point as regards bursting..and each day is
> like living
>> on a tight rope not knowing if I,ll see the end of the day,,that is
> the way
>> of these aneurysms..when they burst there is simply no
> recourse ..death is
>> swift...so I will be glad when the surgery for the graft  that
> takes place
>> ,,,not long now I hope as it is quite large...in the mean time I am
> rather
>> tired when I,m at the computor .and that is why you will not hear
> from me
>> much...but cannot miss 'my email news'...however I,m okay.
>>
>> So there you go..I have had DD all of my life...and it has been
> proven to be
>> hereditary in my family.we all have firm diagnosis  and we are a
> case study
>> for the UK research team...all samples and bloods went there about
> 4 and 1/2
>> years ago , and many of my forebears had diagnosed DD, and so it
> goes on...
>>
>> Nite nite lovely people.
>> Kay~K ( Australia )
>> xxx.
>>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>

Hi there Mary Lou:-)
Gosh you have had a time of it...whew!
It does take a very patient radiologist to see the lumps and bumps...I have
found that usually I get the same radiologist..so that helps...
CT scans in my case show the angiolipomas/lipomas on the liver and kidneys
etc......and also of course  female type ultrasounds with an internal wand
.Then of interest is the angiogram...the lipomas show up as white shadows of
varing sizes and shape..not strongly but they do show.
I really feel that if the treating doctor or surgeon needs to know that you
have DD..and to follow through..on all of my referals from my GP to the
radiologists..he always used to put for example...'Patient has whatever..and
DD.
When my doctor puts patient has DD on the requests for radiology it is
amazing how many hoops the radiologist will go through in my case to try and
view the lumps., lol.

Cheers and thankyou for the kind words.
Kay~K.
----- Original Message -----
From: <chickie456789@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 5:47 PM
Subject: Re: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease
from Kay~K.


> Hello Kay,
>
> i have been reading your posts, and i am in awe of your  courage! i do
> believe we are sisters! i have been away, having back surgery. i  had
> discs L4, L5,
> and L5-S1 replaced, and the spinal stenosis taken care  of. i just
> returned
> home from the hospital. going thru a gabillion posts! i  was interested to
> read
> your take on the organ infiltration of DD. i believe this  is also
> happening
> to me. when i suggest it to my GP, all i get are weak smiles.  a few nods.
> and
> sent on my way. i have not yet been diagnosed with DD. and yes,  i am
> still
> working on finding a primary physician who will take my case on. i  will
> be off
> work for a few months recuperating from this surgery, and i will use  the
> time
> off wisely. ahhhh, i just live for projects, gets my blood flowing.
>
> so please post more...i am interested in finding out which  tests show the
> little beasties. all they have done for mine are the mammogram,  which
> showed
> nothing. my theory is, the docs who read these films  dont  know what they
> are
> looking for. i have had xrays, mri's only. no sonograms, CT  scans. i am
> unsure
> which direction to request my doc to  take.
>
>
> Mary Lou
>
>
>
> ************************************** See what's free at
> http://www.aol.com.
>

Hi there Aub:-)
Okey dokey here is the info...BUT THIS IS NOT SAYING IT IS FOR EVERYONE..BE
WISE AND PLEASE TALK TO YOUR DOCTOR FIRST...

2 years ago my GP was non-plussed about what to give me for the pain of
DD...so he asked a collegue of his who is a specialist neurologist...as the
neurologist was up to speed with pain medications.
His suggestion was Amytriptyline ..85 mg daily...he uses it for cancer
patients..
Now Amytriptyline is a drug often used for anxiety..do not get confused with
that..it works really well as a pain medication also...one just needs to get
themselves used to the drug, because at first one feels a little
'trippy'..( to coin a phrase lol) ..but the sleepy/ dreamy  effect wears off
after a week or so..and then the drug works beautifully...definitely no
pain...in my case anyway.
The drug is being used by 3 other DD patients..2 in the UK..one in Sotland,
and myself..with a huge success rate..but the correct dosage must be
taken..I graduate mine ..I take 20 mg in the morning..and the balance at
night so that I get much needed sleep without wakeup calls.
Okay..
The other medication I am using with success to give me fluidity of
limbs..and movement without pain or restriction is Low Dose Naltrexone...not
to be confused with the high dose given to alchoholics and drug addicts.
This is how it came about;-
My doctor was oversease ( USA) at a drug conference...looking at
alternative, homeopathic, and new uses for old drugs..it was in the USA at
the conference that he heard about Low Dose Naltrexone....the dosage being
3-5mg for males..4.5 mg for females...it was being used with great success
for MS sufferers...and also for autism and chrons disease...and many
more,,,it DOES NOT cure any disease..it simply gies much more ease of
fluidity, and cuts down on the bad effects of disease..I can now walk for
quite a way..I now do at least a 1/2 kilometre morning nad 3/4 kilometre
evening..I  take my dogs into the sea at least once a week..I have fun!! i
could not walk without aids for 3 years prior to taking the drug...I am
doing things that were too long denied me with this insidious disease..I am
a great addy for the drug..LOL...but each to their own thing.
Low Dose Naltrexone works on the good endorphins...I take it in the evening
before bed..so that it can work on the good endorphins between 2 am and 4
am..which is when they are most active..it gives the good endorphins a
boost..so that it helps the immune system.
Sometimes I go for a week taking it during the day..gives my day a real
punch! And I love that:-))))))))
Here are some links that will describe the drug for you Aub...it may be of
use..I don,t know..everyone is an indivdual with indivdual needs...the
mainstream of doctors does not want to know about the drug..but there is a
group on Yahoo where the group owner has the names and phone numbers of
Doctors in the USA who will prescribe the drug...and also lists of
Compounding Chemists who dispense the drug...it has to be a compounded Low
Dose Naltrexone..as otherwise if made with fillers in the capsules it does
not work so the story goes..I have  compounding chemists in 2 other states
that dispenses it for Aussies when prescribed.
I should say that there is nothing illegal about the drug...just a different
take on meds;-)
Okay I,m off to make up some curry and onion and some tomatoe and parsley
sausages,,then I,m off to the walking tracks with my 3 french bulldogs..my
life is good...
And I should say Aub that my secret to a good state of mind and is really
simple...a litle personal..but simple..lol...I am a committed buddhist and
during my schooling about buddhism and before I took my vows as a buddhist
and boddisattva ,my Lama and some monk friends etc..gave me some great
teaching on meditation and  the ways.of buddhist meditation..and just in
case you think.."oh no..another  buddhist nut..."..lol....
I do not push the buddhist view on things ;-))Anyone can do buddhist
meditation..my favorite is 'sky gazing'...;)
But again..that is another episode...
Cheers Aub!
Kay~K.



----- Original Message -----
From: "aubtsturgeon" <aubtsturgeon@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 1:36 AM
Subject: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease from
Kay~K.


>
> Kay~K,
> this is truly a story of coping with Dercums if I have ever seen one.
> Would you be happy to say what medicines you take, and how you built the
> mental attitude to cope as this could help many.
> Thanks for an in-depth post on your experiences.
>
> Aubs
>

Hi there Jackie...
may I have the addy for the group:-)
I cannot find it.
To :-.....Myoken1@...
Cheers!
Kay~K.
----- Original Message -----
From: "Jackie Hanan" <rubyjax@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 11:34 AM
Subject: RE: [Dercums_Disease] Correction.........[For the mods]


> The women's group was set up for those who felt more comfortable talking
> about everything in a private forum. Not just about their private parts.
> Because this group and the other are open to anyone who passes by they can
> read anything that is posted. I just thought it might be nice to have
> another option. It had nothing to do with us being "grownups"; it had to
> do
> with privacy.
> I think there is room for as many DD groups we can get going if for
> nothing
> else,  than the exposure.
> On my group we have a variety of topics, and they aren't all about DD, but
> other everyday subjects that help us cope with living with a chronic
> illness, and the pain. Some of the subjects probably wouldn't be of
> interest
> to the guys, as we talk about our hubby's, and kids, much like what it
> would
> be if we belonged to a women's group in our communities.
> I just get the impression that this group has gotten the wrong impression
> and that may be why not too many has joined. I certainly did not mean to
> offend anyone by starting it.
> Sincerely..Jackie :-)
>
>  _____
>
> From: Dercums_Disease@yahoogroups.com
> [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of wee5peeps@...
> Sent: Sunday, April 29, 2007 1:31 PM
> To: Dercums_Disease@yahoogroups.com
> Subject: Re: [Dercums_Disease] For the mods
>
> You.... you... you said.... t... te.... tes..... I can't say it!
>
> Where are my smelling salts!
>
> Oh, boy, sorry, I should behave, I grew up with a pretty uninhibited
> upbringing.
>
> I remember one of my husband's co-workers, who had a boy the same age as
> our
> son, who was horrified we called his penis a... penis! Or worse, that he
> knew he was born by traveling from my uterus through my vagina, and out
> into
> the world. He nearly fainted when my husband told him that our son knew
> how
> babies got there in the first place, or that he watched A Baby Story with
> me
> at the age of 3.5. :)
>
> I get the power of language, but somehow I totally miss the issue of
> euphemisms, as if referring to something is somehow more acceptable by
> calling it by some different word. Thus starting the endless chain of
> words
> that mean something else. Leading my Mother in Law to have a laundry list
> of
> words that she replies by saying "I KNOW what you MEANT to say".
>
> Oy vey....
>
> Please, can we all agree that respectful body discussion here knows no
> boundaries? Parts is parts, and given that our parts all tend to be equal
> opportunity hoodlums.... may as well keep an open discussion going. I
> swear
> I won't faint.
>
> Crystal - who's been pregnant and given birth too many times to be as
> modest
> as perhaps she ought.
>
> On Apr 28, 2007, at 8:03 PM, Will I Am wrote:
>
>
>
> recent posts. Please, Kay, whatever makes you feel more comfortable, of
> course....Will - I - Am PS - Frankly, I was born with an undescended
> testicle and inguinal hernia. Both required surgical repair later, still
> at
> a very young age, and with the way Dercum's just loves that scar tissue, I
> can get pretty riled up just thinking about what might be going on when I
> get cramps in that area..............There, now I've started the
> embarrassing talk......
>
> <http://geo.yahoo.com/serv?s=97476590/grpId=1371922/grpspId=1705061589/msgId
> =22164/stime=1177815943>
>
>
>

Hi Pam,
I am glad you have gotten the stress under control. You are right to
not want to disturb the aliens, I think they feed on stress,,,lol.
Our high temp was 86 today and we sweated while helping my son move
but showers are forcasted for the whole of next week. Oh well, that
is Texas for you; if you don't like the weather just wait, it will
change.
Take care,
Sylvia



--- In Dercums_Disease@yahoogroups.com, Pamela Harrison
<ozziespamela@...> wrote:
>
> Thanks Sylvia,
> It does seem like everything goes wrong at once. I have a good
umbrella though,lol.  The car will just have to wait. The repair
would come to $350 and I don't have it. I've decided not to stress
on it to much. Stress makes the aliens grow.
> Pamela
>
> ----- Original Message ----
> From: Sylvia <afikaufman1@...>
> To: Dercums_Disease@yahoogroups.com
> Sent: Sunday, April 29, 2007 6:22:20 PM
> Subject: [Dercums_Disease] Re:To Amy..OT
>
>
>
>
>
>
>
>
>
>
>
>
>
>             Dear Pam,
>
> When it rains, it pours and my umbrella usually has holes in it
too.
>
> I feel for you, I hope things improve very soon.
>
> Take care,
>
> Sylvia
>
>
>
>
>
>
>
>
>
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>