I emailed Dr. Herbst and asked but haven’t heard back from her. I have several large, hard areas in my upper abdomen, not very painful but I seem to be getting a lot of pressure when I eat or even drink a glass of water. It doesn’t feel like normal bloating and gas. Could lipomas be causing the pressure?
Grandma Sylvia, I will certainly look into that. I have been up and around more the past couple of days. I started taking the mexitil. I am still in bed though. I hate these 4 walls sometimes.
I have the same thing…and there are more running down the sides of my abdomen and some on my waist as well .near the kidneys…I wonder the same thing…The one big one in my upper abdomen makes me feel like I’m swollen…
Those are the same places mine are Ejohnson. I have them going down from my breasts to my kidneys. Over my liver and spleen areas. They pull hard and they are very large. I had an mri and ultrasound that showed I have them on my kidneys already. That was 5 years ago before I ever knew about DD. The mexitil seems to be helping with it though. I just started it last night. I feel kinda weird, but not bad. It is hard to describe. Tinglely all over.
Kaylieth…Let us know what the doctor says. I wonder the same thing. With all of the lumps getting bigger and more numerous all the time it would seem that it has to be hard on your organs. After all there is only so much room in there! : ) Maybe that is why the fat grows…trying to make room for the lumps? I would like to hear some actual case histories where the lumps have affected organs. Anybody run across any? : ) Hugs, Grandma Sylvia
I found a website that says lipomas can grow large and press on internal organs, but it was a pet site! I searched for some HUMAN information but couldn’t find anything. I am shocked at how many popular medical websites do not even mention DD in the area for the topic ‘lipomas’… it seems like they should at least mention DD to help people who search lipomas.
Sorry I couldn’t find info on humans, but if dogs can get them and sometimes they press on internal organs I suppose humans can too.
Here is the site:
http://www.pethealth101.com/fatty_tumors/fatty_tumors.shtml
I have "talked to members of various DD groups who have had lipomas on and in organs. One has one inside her stomach and it partially blocks the pyloris where food passes through to the bowel. Another has them on her kidneys, another on her liver. There have been case histories and autopsies that found lipomas in the heart, lungs and brain. Are you sorry you asked?
Hugs and spoons,
Pamela
Well, damn! I have resent my question to Amanda, who helps Dr. Herbst and interviewed me about the MMP inhibitor I take but sounds like it could be a problem.
I did get an answer from Dr. Herbst on whether or not the lipomas can put pressure on internal organs and her response was “yes”.
Kathieh…Did you ask her if she knew of any deaths attributed to DD? Just being morbid! It is possible that it is not even recognized by the physicians doing the autopsies as other physicians don’t recognize it in the living. Hugs, Grandma Sylvia
There is a DD sufferer living not far from me, her doctor put her onto an elderly lady that has suffered DD most of her life, I try not to look at the bad it can do, but just try to look to the future and the fact I do have to live with this awful disease, and the ignorance around as its not publically known to the people around me. I have tried to educate everyone i come across about it. If and when I do ‘go’ I will have my husband insist in the autopsy that they look for lipomas. Until then I am not even going to think about it.
Does anyone know how you would donate your body to science if something happened? I seriously would.
Christine, on donating your body to science:
I think I filed that info away not so long ago. I’ll look for it. Someone had asked Dr Herbst and she responded. It is pretty complicated. I would do it too, but only to Dr H for DD research, not for general research.
Hugs and spoons,
Pamela
I can’t find the info on donating your body. I’ll keep looking and I will post it if I do.
Hugs,
Pamela
Now Pam and Christine…don’t get any ideas! If I have to stick around you guys do to! No one else but Dr H would probably want our used bodies. I would like to leave her some of my lumpy fat also! I have plenty to go around! : ) : ) Grandma Sylvia
Sylvia,
I’m not planning to kick off any time soon! BTW, Did u get what I sent you?
Hugs and spoons,
Pamela
Thanks for all your trouble Pam. I got it! Have a great day tomorrow. Hope your cold is better. Hugs, Grandma Sylvia
Thanks for sharing the answer Brennie, that is good to know.
geordie, I am going to try to educate my family too. I plan on making a page of info and passing it out on thankgiving. (what a festive treat, hehe). Oh but I think it is a good idea to at least try to let family know so they can be supportive. (if they aren’t supportive at least I will know I tried)… I also plan on making a flier about the disease (I am into PC graphics and can probably create a professional looking info pamplet thing). I’ll pay to have a lot printed out and mail them to doctors. I am not rich, so I think I will probably just make enough to send to dermatologist in my city. I would guess that would be the best specialist to target (?)
(sorry so long, I tend to get on a roll and can’t shut up! LOL)
Grandma Sylvia,
I am only 36! I certainly am not going anywhere. I was just thinking since I had just got my license renewed. I am an organ donor but they don’t have a place to donate your fat… and I don’t think that fat is an organ. lol. I just think that if we can do it to find out more about the disease that I am all for it. I KNOW my lumps pull everyday. The pull is so deep and hurts so much. I was looking at my abdomen the other day an noticed a softball sized one that has a blue vein around it. I told my husband it looked like a bullseye.
Pam,
Thanks for looking for that info for me. My husband said that I can get a website going. I want to put my research on dd on there. This way I don’t forget what I already done. LOL I was thinking about calling it lumpette.com HAHAHAHA! I thought that the name is appropriete. You guys are more than welcome to put info on it. I am going to get started on it this morning.
Big Hugs to you all.
Christine
Christine,
Did you see the note Dr Herst’s sent you? She wants to work with you on this so you can use her existing website at no charge. I think that’s a great idea!
Hugs,
Pamela