Dercum's Disease Support Group

I'm sort of ticked off this morning about DD and idiot doctors. One of my previous family doctors mentioned that if he couldn't figure out what was wrong with me he would have to send me to the mayo clinic. This was the same doctor who thought my pain was in my head and I moved on to another doctor. I am glad I moved on when I did! He would have sent me to the Mayo Clinic and my diagnosis would have taken even longer! This morning I logged on to the mayo clinic website, just curious about the DD info. They have NOTHING about it. I jotted an email to them about it.

My therapist mentioned the Cleveland Clinic, so I went to their website. DD isn't listed there either. I jotted an email to them and they answered by telling me I needed to make an appointment with them (375 mile trip for me! I don't want an appointment! I wanted an answer to my email, Duh! Do I have to travel 375 miles to get a reply to an email?? AUGH!)

Oh well, just ticked off a bit and wondering why DD isn't listed on well known medical websites. Does anyone else write emails to sites that don't list DD? I think it really stinks that there are DD sufferers out there who may never know what is wrong with them because their doctors rely on the Mayo Clinic. I feel like I just barely figured out I have DD -- I was so broken down and tired of trying to figure out what was wrong with me, I may never have figured it out if I stayed with a doctor who relied on the Mayo Clinic. I feel sad for people who will be labeled as mentally ill and their real pain be dismissed.

Here is the response I got from the mayo clinic:

Thank you for your e-mail. The purpose of our Web site is to provide general health information to the public. Although Mayo Clinic physicians are an integral part of the development of articles found on our site, our editorial staff's strategy is to select topics that are of broad interest to many individuals. Therefore, there's no direct correlation between those

conditions Mayo is renowned for treating, and article topics found on our site.

Our editorial staff is always eager to know what topics our users are interested in reading about, so we would be happy to forward your request for information onto them for consideration. Thanks again for visiting MayoClinic.com and we hope you'll continue to think of us for all your health information needs.

Sincerely;

Stacey

Mayo Clinic Online Services

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I have to laugh at the last line about "continuing to think of them for all my health information needs". Oh yes, I will continue to think of them for none of my health information needs, LOL, that was the point of my letter to them in the first place (lack of information)

Their site has an A to Z disease & condition area and a symptom check thing to help people who have symptoms and can't figure out what is wrong with them... I guess not enough people have DD to merit helping them.

That doctor I mentioned in my last post wrote to me after I wrote to him about my diagnosis... he mentioned that DD is not recognized by the mayo clinic so he would never have diagnosed me. SO- DOCTORS rely on the mayo clinic and a DOCTOR told me he would never diagnose me with something not on the mayo clinic website.

Oh well, I feel sorry for all the patients who have a doctor like my last one, they will continue to be lost, seen as mentally ill or hypocondriacs. I actually feel grief for all those people I don't know because I was almost one of them.

Suri,

I had a doctor say the same thing to me...and I almost scheduled a trip to go to Mayo. Thank goodness I checked it out first, b/c like you said, there was NOTHING on there about DD. It makes NO sense. I thought that was supposed to be one of the places you go when you have no other options and a rare illness... guess not.

I was not happy with my doctor for saying I should just schedule an appt.- he didn't even know they don't know of many disorders. UGHH!

Hugs,

Amy (who's ticked off with you!)

I will NEVER think of them for ANY health need. I heard you have to go there, plan to spend a couple of weeks at one time there for appts., and meeting with your assigned "team" of specialists. Yeah, I could see us forking out hundreds/thousands of dollars to stay in Minnesota for 2 weeks and have them just look at me and shrug, saying "we have no idea..." Hearing all of those facts (from a friend who's been to Mayo 3 times) made up my mind for me.

Amy

I hear your pain...and feel it... the other day i saw a Rhuemy doctor and he asked me who dx my DD, and i said tried to explain to him how i have brought info to my doctors about DD and they have agreed that is what i have, but there have been no tests.. and he said, "WHO DIAGNOSED YOU WITH THIS DD?" he said, loudly... i said, my doctor, after ruling out other things, agrees with the information.. and again, he asked, loudly, who dx me... so, i gave him the hame of my doctor now..and he said.. "Oh, Ok"... weird.. weird vibes...

I don't know about these websites and clinics that have no information... perhaps after dr. Herbst releases her research and gets more information, more doctors will listen to us...more information will be listed.

at anyrate.. i understand...

sophie

Aww Suri <hug>. Even though I am not unhappy with my doctors right now, I have come to the conclusion that Most doctors are morons and in it only for the almighty buck. It's more rare to find the 'old fashioned' caring doctor who treats you like a patient rather than a 'general symptom' and actually Helps lol. Where's Dr. House when you need him to fix it all lol.

I understand - only thing we can all do is keep trying to find the 'right' doctor. Oh and I am 20 minutes from the Cleveland Clinic - talked on the phone to a 'scheduling nurse' and when I said what for she just said "I have no idea what type of Doctor to even recommend for that, I've never heard of it." - So even the Great Cleveland Clinic is clueless hehe.

I feel ya,

Smiles no matter what,

Lauri

I think I remember someone sharing about the mayo clinic and their DD experience there... I read it some time ago (like last year, too far back to rely on my memory) but I think someone did go to the mayo clinic and spend days and days there to be told they needed psychiatric care. That really stinks.

Oh well, I wrote back and told them to please send my email to the editorial staff and I also added my lack of diagnosis when I relied on a doctor who relied on the mayo clinic's list of diseases and conditions. That isn't exactly how it happened, but had I not changed doctors my old doctor admitted he would never have diagnosed me. Thank goodness I switched family doctors (but the one I have now has no interest in DD even WITH the facts! LOL!) He is one of those "WHO DIAGNOSED YOU WITH THAT" doctors... I told him I diagnosed myself and then found a doctor who agreed with my diagnosis! LOL! OH this is off topic, but my menopause was out of control and I went to that idiot doctor and asked for a hormone test. He refused and just took blood and sent me home. I was in tears from lack of sleep for two days and he sent me home. 4 days later I went to the emergency room begging for help. ANYWAY... when I saw him again I brought the hormone test record (from the ER) and showed it him... my numbers were off the charts... guess I diagnosed my menopause before he did also! He hates me now, hehe. I have to stick with him until my liver tumor scare is over (in one year). The specialist that is monitoring my liver told me to stop switching doctors because my records were confusing. I will stick with a doctor when I find one who half way pretends to give a poop.

Oh I feel better now, lOL!!

I am grateful for my pain management doctor.

Suri..did you ever try the black cohash or whatever it is...some health food thing for hot flashes? I have not tried it...just heard of it. How are your hot flashes?

I think someone in one of the groups lives in Michigan and comes to the Cleveland Clinic and was diagnosed with DD there. Do you think they might call it Adiposa Delarosa on some web sites? They probably would not recognize that either. What nerve for that doctor to tell you not to change doctors. He should have appreciated the fact that you came so well prepared with medical records. Lately when I schedule with a new doctor and they send you that pack of papers to fill out and bring with you along with your medical records....I do and the nurse takes everything...then the doctor comes in and obviouly has not even looked at them...they ask things like..have you had an MRI on your foot?..when I gave them a copy with my records..they don't have time to read your stuff but boy-oh-boy you better bring it with you..Obama wants the records all on the computer so they can share..Aetna already does this..we have Aetna Medicare. So then they can all just look on the computer and see that you are just a fat crazy hypochondriac doctor-shopper and save them the trouble of a diagnosis! Go get 'em Suri! Lauri..I want House too!I wish they would work DD into an episode. I love the show except that my husband keeps fighting with him OUT LOUD while I am trying the hear the show. He can't seem to grasp that House is supposed to be mean!

Sophie...I have a letter I like to send to doctors who are rude to us to let them know that we are out here and we don't like it! I send DD info with the letter. If you want I can send him one.

Hi Amy...how are you doing? Are you on the Dr H diet? How has your DD been lately? I hope you are doing better than me! Hugs to All, Grandma Sylvia

No, I never tried the cohash. I doubt anything over the counter would help me though because I need the highest dose of estrogen allowed and still have mini-hot & cold flashes.

I always look for both dercums & Adiposis Dolorosa... but since someone has gone to the cleveland clinic and was diagnosed with DD it may be true what the mayo clinic said - they only "select topics that are of broad interest to many individuals" I think that sort of stinks that they don't even have it listed when you use their "symptom checker"

Oh I don't think having our medical records on all computers is a good idea. WAY back when I was having trouble with doctors not taking me seriously I ended up going to another county. I have a history of depression and I thought that may be why no one was helping me. I went to another county on purpose so that doctor wouldn't see my history... and that doctor was the FIRST one that ordered a CT scan and found the baseball size tumor I had. I would like to have that option again if I need it. People with a history like ours may need to see a doctor unaware of our past in order to get help. It would really be sad for someone like us, if one doctor thinks they are nuts they all will.

I used to watch HOUSE, it is a good show. I stopped watching it though after I spent two weeks watching my mom die in a hospital. I break into major sobs when I see an IV. Oh I am a baskey case!

Suri..I am so sorry about your Mom. My Mom died in horrible circumstances that I will never get over. She died 15 years ago April 7th and I am still not recovered from the way she died.She deserved better. She was put on life support against her wishes and taken off a week later...a horrible week. We have all the paperwork where our daughter can find it so we don't end up like that. I was 48 when she died and she was 71.She was 8 years older than I am now when she died. I am really depressed as the anniversary is this coming Tuesday. She did not live to see any of my grandchildren. Leah was 7 months pregnant with Alex when Mom died. She would have just loved my little granddaughters. She liked girls as she had seven daughters.Take care sweet Suri. Hugs, Grandma Sylvia