am i alone with fatty tumors
- deedots
- deedots
- Fairdinkum
- motormouse
- dercum
- night_star
- FELICITY12345
- redback
- ShirlGirl
- ShirlGirl
This archived discussion is "read only".
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» deedots - Re: Re: Dercums? I have been searching for years for someone to
Hi!I'm getting ready to go now. I found several articles at: Dercumshope.org as well as the NORD ... National Organization for Rare Disorders through WebMD. There is a great description and possible treatments, etc. under Adiposis Dolorosa at www.emedicine.com/der/topic839.htm. I am armed with these articles and a resolve to get a referral. Thanks for your support. Will let you know what happens.
deedots
-- posted by deedots
» deedots - Re: Re: Dercums? I have been searching for years for someone to
Hooray!! I took those articles with me. My doctor actually spent 20 minutes reading through them! She is working on getting me a referral to a Dermatologist for a supporting opinion and she also intends to submit to my insurance to see if they will cover removing some or all of these nasty things. She also says can give me injections for the pain and swelling. I know it is only a beginning but I have been suffering with the pain from this for so long....at least it is hope. I will update when I learn something new. Thank you again!-- posted by deedots
» Fairdinkum - Re: Re: Re: Dercums? I have been searching for years for someon
In response to Re: Re: Dercums? I have been searching for years for someone to posted by deedots:It may not be the best, but there is much to our publicly funded Medicare system (for all) we all should be grateful for here in OZ.
I reckon my health is too important to leave in the hands of doctors etc. So making informed decisions isn't about being bluffed by medical-speak either.
I did find some stuff on Dercum's but I wanted analysis from medical journals etc in a quality site. I'll check out: http://www.emedicine.com/der/topic839.htm and the others when I get a chance. I did go into that site but I wasn't assuming the problem was definitely Dercum's so was also checking elsewhere..and only so many hours to a day. 
I think your questions and pattykakes helps others to check things out for themselves before they get a 'second' opinion from their doctor. Good luck.
Jeff
-- posted by Fairdinkum
» motormouse - Re: Re: Re: Dercums? I have been searching for years for someon
Hi I was told my symptoms were in my head and that I was unhappy So to hell with them I am so glad I persisted. !4 fays ago I had one lipoma removed it was very large it was taken from my ankle I have a cousin with them down his spine I had a granmother with one big one on her back I have a brother with them on his elbows I have an aunt with them on her back I have ywo more one one the other ankle and one on my hip I have thryoid problems and athritis and now realise that this is due to this disease When I go back to the hospital I am taking the info with me I will make them sit up and take note Hope that you get the relief I have had having it removed has been painful but worth it I dont now have pac man eating away at me that what the pain feels like. I am so glad I looked up lipoma and found this Dont be afraid of being alone there are lots of us out there motomouse-- posted by motormouse
» dercum - More Dercum's information
All -Try http://www.dercum.org
or
http://dmoz.org/Health/Conditions_and_Di...
for more information on Dercum's disease.
don
webmaster,
www.dercum.org
-- posted by dercum
» night_star - tumors
In response to tumors posted by pattykake77:Hi Patty..I too live with these fatty tumors and have them all over..most on arms & top of legs...it is very difficult at times to deal with the pain it gives..mine turn like a light green color almost like a bruse color..some are very sore, they are in different sizes...my largest is the size of a golf ball...I have had 2 removed..I was told it is a disease called Dercums or Adiposis Dolorosa, Please look this up..and be strong..I know just what you are going thru.
-- posted by night_star
» FELICITY12345 - Re: Re: tumors
In response to Re: Re: tumors posted by IMADAG2:
Recently I developed a lump in the palm of my hand and then later a lipoma under my right knee. I have had a fibroma under my left foot for years, am probably getting one under my right foot. I have a cyst on the back of my neck (and another large one in my kidney). Also I have been having bouts of IBS. I am VERY VERY tired and have started to have visual problems too (post cataract). Could all these be related?
Mary Ann
P.S. Looks like I may be getting another lipoma, same knee. I have an appointment with a plastic surgeon (the dermatologist couldn't figure this out, except to name the various growths).
-- posted by FELICITY12345
» redback - Re: Re: tumors
In response to Re: Re: tumors posted by FELICITY12345:
As IMADAG2 I last posted here under that user name around 18 months ago and no-one's visited this topic in the last 5 months. Maybe those who directly know will come back?
I needed to swap to Fairdinkum, now redback. I did online research for this topic back then and with others, we posted responses and some hotlinks here that should give you good information. Check out all the responses.
I don't know if all the problems you mentioned are directly related. You should ask your doctor to refer you to a specialist physician that does know. There are alternative names - Adipose dolorosa -Dercum's - for them to check. And like the other poster, maybe if you print out the articles for the doctor.
Good luck
-- posted by redback
» ShirlGirl - Re: Re: Re: Dercums? I have been searching for years for someon
In response to Re: Re: Re: Dercums? I have been searching for years for someon posted by motormouse:
Hi Boy I am glad to find you here.
I am desperatly in need of support and some help.
The more I read the more cinfused I am becoming.
I have been told that I already have Primary Lymphedema, Lipedema and Lipomatosis. of the latter I have two very large ones; one on each hip and many amny others in and on mybnody as well.
My family Dr advises me to have the ones on my hips surgically reoved asap.
becasue most of the Drs I come across seem to me more uninformed than I am; it makes finding a Dr or Surgeon very diufficlut.
I t has been suggested to me to find a good vascular Specilaistof which there aren't any only vascular Surgeons... as well as see a Plastic Surgeon for removal of these Lipomas.
I really want to get tpo the bottom of what is all worng with me and the interconnections of all these dieases. Now I am also supecting Dercums Disease too becasue I seem to have all the synptoms.
I also have Osteo arthritis and have had a lot of Endocrine problems throigh out the years.
Will you please get in touch with me personally at File@sympatico.ca.
I really need your input help and support re what surgeries you know of or have had and what kind of Surgeon did them and yoiur ouitcome.
Thanks so much.
A frustarted and desperate Shirl Girl
-- posted by ShirlGirl
» ShirlGirl - help Help I am desperate!!!
To an one that reads this.....
Is there any link between Dercums Disease and Liomatosis as well as Lipedema and or Primary Lymphedema.
I just posted a message to someone on here not sure who its was; please read it too.
Yu can get in touch with me personally at File@sympatico.ca
Thanks so much. I am grasping on to threads right now as I need to comlie info to take with me when I can find the correct kind of Dr.
I am open to any and all suggestions and help.
Thanks ever so much. A despoerate Shirl Girl.
-- posted by ShirlGirl
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