MDJunction - People Helping People
 
Ask a Question
02/06/2009 03:00 PM

New Here

Heidi528
Posts: 16
New Member

Hi! I found this site by accident - lol. I am a 49 yo female who has all the symptoms of Dercum's. I was diagnosed as having Fibro a couple of years ago, and am even involved in a clinical trial for meds for Fibro. About a year ago I started growing 'lumps' under my skin, and recently found the term "Dercum's" during a search. I swear, it was as though the article was written about me, it was so perfect!

My daughter is 28 and has similar problems. In the past 2 years she has even had 2 surgeries to remove unexplained growths, 1 that involved removing her gallbladder as well, and 1 for a growth that was pressing on her ovaries. Her doctor has threatened to remove her ovaries if she develops another growth there. Imagine our surprise and relief when I found out about and researched Dercum's - now we both have an idea of what is wrong with us.

To further complicate all of this, my mother had similar symptoms all her life, though no definitive diagnosis was ever made. Ultimately she died with lumps under most of her skin, leaving the doctors baffled.

So here we are, with a very good idea of what is going on - now what? I asked the doctor I see for the clinical trial about Dercum's, and got a blank look in return. He did tell me that the lumps under my skin are "just lipomas", and lipomas are harmless. Great. My daughter's doctor is about the same - if he doesn't know what is wrong, then there is nothing wrong. Sound familiar? Or it's all in our imagination, or we're making a big deal about nothing and should stop reading so much on the internet.

Which brings me to this - where can I go to get an actual diagnosis and possible help, without being committed? lol Seriously. I live only a few miles from NORD, and was given the name of a doctor from a person I contacted there, but she is a few hours away and not accepting new patients.

I'd like to be able to get an actual diagnosis and so would my doctor. Does anyone know of anyone in or around Connecticut that they could recommend? New York works, as does Massachusetts - I don't mind driving if it helps. We have a 3 generation medical issue here, and I don't want to see another one of us die because the doctors are clueless!

Thanks in advance. Feel free to give me any advice!

Reply

02/06/2009 05:01 PM
jfuller
jfuller  
Posts: 574
Member

Hi Heidi and welcome to our group. We are glad to have you. Just about all of us happened upon Dercum's on the net. I was told that lipomas were not painful...ummm, well, mine are...so I typed in "Painful lipomas" and boom, there was Dercum's...gotta love Google! I am in the process of finding a doctor around here. There is a doctor I am going to see in Atlanta at Emory who co-wrote an article on Dercum's. I made the appointment in early November and the earliest I could get in was May 4th. So...if you want to travel, Dr. Jack Arbiser is in Atlanta. I think that there should be someone closer to you, though. I looked for a doctor and finally figured out that the docs who know about Dercum's are usually dermatologists...the other ones usually don't have a clue about it! good luck and I am looking forward to getting to know you better. I know how it is to wander upon this site and finally feel like you are "home" where people finally understand you and feel your pain...literally!!! Smile

02/06/2009 09:48 PM
grandmasylvia

Welcome Heidi..We all followed a path similar to yours in finding the DD diagnosis. Here, we all understand exactly what you are saying. I understand your concern for your daughter. I also have an adult daughter who I think has DD. She will not discuss it as she sees how it has affected my life. Maybe later. We offer you friendship and support. Jump right in with any questions. I live in central Ohio and am treated by a wonderful rheumatologist.We all print out articles from here and other places and take them to all of our doctors to try and get more doctors familiar with DD. I personally do not know of any cure at this time.I am 62 and have probably had DD since puberty.My case is quite advanced. Hugs, Grandma Sylvia

02/07/2009 05:59 AM
Suri

Oh yes, we all have been there and know EXACTLY what you are feeling. For me, I finally received help and got a diagnosis when I printed out DD articles from the web. I saw three doctors after I was certain I had DD (the third one diagnosed me and is helping me)

This is the page I printed out and highlighted that doctors looked at the most and understood.

http://www.genome.gov/17516629

(but there are many cretitable websites out there)

Hugs,

Suri


02/07/2009 07:03 AM
placidcharmer
placidcharmer  
Posts: 441
Member

Heidi,

Very nice to meet you and welcome to our group. We are so glad to have you. W00t I know that we can help you find a doctor. That actually is my specialty. I have been doing research and luckily I think I know a place for you to go. I think that there is a doctor at Massachusettes General Hospital. I know they are recognizing it there. I am going to try to contact them and see who it is. I am sorry sometime I can't remember who I have spoken with. I have done so much research.

I also have the website dercumsworld.com. I post information as it comes to me. I am so glad that you found us here and it is probably the same way we all have. Typing in multiple painful lipomas and here we are in all our glory.Smile I don't understand why more doctors don't do this. They now have that capability to link themselves to the net. What is so difficult typing in a few words. It is so frustrating and we ALL understand.

I am sorry that I was unable to welcome you sooner, I am usually right on top of it. I had a rough day with my stove yesterday. I am going to have to research on how to fix it. I was going to school to be a mechanical engineer so it shouldn't be too difficult.

WELCOME...WELCOME...WELCOME, OUR NEW FRIEND!


02/07/2009 07:09 AM
placidcharmer
placidcharmer  
Posts: 441
Member

Heidi,

I forgot to add it, my number is 8643931001. I have an open door policy here for anyone with DD or thinks they have DD. If you would like to contact me feel free. My phone is always next to me...well, my husband, Scott, but he will give it to me. LOL.


02/07/2009 11:33 AM
Heidi528
Posts: 16
New Member

Wow! This is like coming home. You all are so nice, and I thank you for the warm welcome. I had that "aha!" moment when I googled "painful lumps under skin". I was so excited I called my husband in to read it. Now, to find the doctor who will put it on paper for me. NORD did give me the name of a doctor at Mass General. Dr. Campen. Does she sound familiar to you? I spoke with her assistant (?) on the phone, who said the doctor lives in Atlanta and comes to Mass General once a month. Could this be the same doctor placidcharmer and jfuller are referring to ? Seems more than a coincidence. However, I was also told she is not accepting any new patients. The lady I spoke with said she would talk to the doctor about me, but I never heard back. Alas. I'd really like to have a diagnosis in writing - I've applied for SS disabililty, again, for the insurance. I'm more than willing to travel, within reason. All I need now is a place to go!

02/07/2009 12:15 PM
placidcharmer
placidcharmer  
Posts: 441
Member

Heidi,

I will make some phone calls on Monday. No, Dr. Campen isn't the one that I am thinking of. I will let you know. Dr. Campen, I think is the one that Dr. Herbst (in San Diego) was referring to that isn't accepting new patients. Let me look through my records and to the phone calls and I most certainly will get back to you.


02/07/2009 12:23 PM
jfuller
jfuller  
Posts: 574
Member

Dr. Campen sounds familiar in all of my research, but I can't tell you how or why it sounds familiar! I, too, have researched hours and hours. There is a link on here to listen to Dr. Herbst give a talk on blogspot or blogtalk or something like that. It is probably an hour long. I listed to it while I was doing other stuff on the net...and cried during several parts of it. It was like I finally found someone who understood. I knew at last that I wasn't crazy or a hypochondriac! I also realized that it was ok to slow down and who cared if my floor wasn't spotless or my furniture had dust on it! So, now I take the time to get done what needs doing first...and then if I have any leftover "spoons" I get to what I need to do. I am an elementary school teacher..and by Saturday I am exhausted. Saturday has become my "re-spooning" day where I take an extra long nap. Then, Saturday evening and Sunday night I do what I need to do during that time. I am going to research Dr. Campen and see what I can find! Again...welcome...we are glad to have you here!

02/07/2009 12:26 PM
jfuller
jfuller  
Posts: 574
Member

lol, I think Christine and I were typing at the same time! Yes, Christine, I do believe that yoou are right...Dr. Campen was the one that Dr. Herbst mentioned on blogtalk or whatever it was. I got my hopes up...if I remember correctly, Dr. Herbst said that Dr. Campen was in Savannah, but wasn't accepting new patients and my hubby decided he wanted to camp outside Dr. Campen's practice until he or she agreed to see me! Smile gotta love him!
Reply

Share this discussion with your friends:
<< Start < Prev 1 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | About Us
Copyright (c) 2006-2014 MDJunction.com All Rights Reserved