I am up to well over 50 or more in just a year. I'm in God awful pain. This is a horrible disease with little hope of getting any help. I really wish someone could invent a medication that could be injected into these lipomas to dissolve them.
@@patriciasmith5083 there’s a company in Israel working on making something like this they’re called Raziel therapeutics im not sure what progress they’ve made on their invention though. The medicine is called RZL-12 if you want to google it
I’m just seeing this for the first time . I’ve been trying to follow Dr. Herbst through the numerous symptoms of Dercum’s and Lipodema. I’m age 78, and after complaining for four years about my painful “lumps” , which most Dr’s thought were RA nodules, a very wise Dermatologist did research after hours and came up with possible Dercum’s. Your talk was not only informative but intelligent and humorous. I thank you for having the courage to put yourself out there and share your journey leading up to a definitive diagnosis. . Last month I finally had a plastic surgeon remove three “ giant “; (their medical terminology, not mine ) lipomas. 6 cm x 5cm x4cm was the smallest one.
Thank you ! I have dercums and have had a carcinoid tumor removed and lung nodules and , and ,and. Wow…. Really validating to know I’m not alone. Thinking of seeing Dr. Herbst… someday. I’m in Washington state. You are awesome and brave.
Thank you so much..I enjoyed listening to your talk....I was diagnosed about 6 years ago at 45 but can look back and say I've had Dercum's since I was about 25 or so..I take one day at a time and keep looking forward :)
She says she had no childhood trauma, but she was born premature. It’s not just about what our minds view at trauma but also what our bodies view as traumatic.
Carcinoid tumor is also called Neuroendocrine tumor, and flushing is one of the symptoms of a hormone producing tumor. I really hope, the lecturer is in a NET certified centre for regular checkups. It might return or spread, if not kept at bay.
I, too have a mass in my chest where a differential is either a pulmonary carcinoid or a pheochromocytoma. I have been observed for 4 years via CAT scans and it has not grown. I believe I have diverse Dercums as well. I also have MCAS. AS a result, surgeons classify open chest wall surgery for me to be high risk and not one has attempted a biopsy. Question for you...aren't you scared that each new lipoma is indeed a carcinoid?I see Dr. Herbst in June. Thank you very much for this interview. I had to skip this year's convention because of an unexpected surgery on my hubby.
I have dozens of lipomas. I started with one on my arm years ago and in the last 3-4 years they are growing all over my abdomen, arms outer thighs and rib cage. I'm only 35 with no kids. I have swelling in my ankles, pseudotumor cerebri and serious sleeping issues. I'm an terrified that I have Dercum's and don't know where to begin. I'm grateful for the information on the fatdisorders.org site. I hope I can get some answers soon.
My mother also has lots of them especially in lower rib area and on the side of ribs ,but she is much older,they are quite painful especially in cold weather.
Hi very thanks for your support But i notice another thing , did you make a neck Mri to exclude klippker feil or cervical rib because of noticed short neck I have the same dercum,s ,lipedema, cervical rib, klippler feil syndrome, hypermobile joints, leaky gut and lymphatics , i think that all these disorder is the same
Neuroendocrine Cancer is what you have, Carsonoid is an out dated term. I am a PNet, Pancreatic Neuroendocrine Cancer, I believe I have Dercum too but find once doctors find one thing they stop looking. Both our cancers are the same kind just growing in a different spot of the body. You need to see a NET specialist, it can always come back, you need to still be monitored.
Dercums and yes it can come with it. I have stage 4 Osteoporosis, Rheumatoid artritis, severe fibromyalgia and Multiple Sclerosis along with Reynaulds disease. I've also had reiters syndrome but it's dormant. I have a fatty liver and pancreas issues. During my hystrectomy my lymphatic system was nicked it started gushing out of my body in huge amounts. This stopped after 3 weeks. I had 3 lipomas one was removed over 30 years ago. The other 2 caused no discomfort and had no changed. I received 3 covid shots and boom they started growing all over. Anyway I suffer horribly. 2 years ago I fell down my basement stairs and burst fractured my L1. I could not get it fixed because of fragile bones. I suffer from severe foot issues. Anyway it's a horrible disease with very little help.
how do you avoid depression with this? I am still undiagnosed and from info I have found online it sounds like there is no cure for this. I do have pain in many body parts that is so severe at times it is debilitating. I have just learned of DD and Lipodema and I believe I have been suffering from this for over 15 years. Embarrassed and humiliated by my legs, life is so difficult and sad now because exercise and beach activities were once my favorite past times.
I have done my best to keep working with mine, I have even changed my career three times in line with my DD. I had my hysterectomy at the age of 33 yrs old. I have a lot a nerve pain and numbness down my left leg. I can't swim as I do not have strength in my arms. Not sure if that is down to the Fibromyalgia though.
Thank you for this video, and for keeping it online even after all these years. So very helpful.
I've NEVER seen so MANY of MY PERSONAL symptoms/suffering showcased in one video. If I had a shred of doubt at all, this annihilated it! 😳
I am up to well over 50 or more in just a year. I'm in God awful pain. This is a horrible disease with little hope of getting any help. I really wish someone could invent a medication that could be injected into these lipomas to dissolve them.
@@patriciasmith5083 there’s a company in Israel working on making something like this they’re called Raziel therapeutics im not sure what progress they’ve made on their invention though. The medicine is called RZL-12 if you want to google it
This is so refreshing to watch someone speaking openly and positively. Welcome to my world - living with Dercum's!
I’m just seeing this for the first time . I’ve been trying to follow Dr. Herbst through the numerous symptoms of Dercum’s and Lipodema. I’m age 78, and after complaining for four years about my painful “lumps” , which most Dr’s thought were RA nodules, a very wise Dermatologist did research after hours and came up with possible Dercum’s. Your talk was not only informative but intelligent and humorous. I thank you for having the courage to put yourself out there and share your journey leading up to a definitive diagnosis. . Last month I finally had a plastic surgeon remove three “ giant “; (their medical terminology, not mine ) lipomas. 6 cm x 5cm x4cm was the smallest one.
Thank you ! I have dercums and have had a carcinoid tumor removed and lung nodules and , and ,and. Wow…. Really validating to know I’m not alone. Thinking of seeing Dr. Herbst… someday. I’m in Washington state. You are awesome and brave.
I’ve developed a bunch of lipomas since my deployment to Syria. I’m 25 and it keeps growing and I’m glad you brought this up.
I would love to know how she is doing now in 2022. Loved listening to her and her lovely sense of humor about this crazy disease. It's not easy.
I am glad to have found this video. I am starting to suspect I may have this, thank you for sharing your story.
Thank you so much..I enjoyed listening to your talk....I was diagnosed about 6 years ago at 45 but can look back and say I've had Dercum's since I was about 25 or so..I take one day at a time and keep looking forward :)
Thank you! I am a med student and this helped me a lot understanding the disease.
Great job. Thank you for sharing. Keep researching.
She says she had no childhood trauma, but she was born premature. It’s not just about what our minds view at trauma but also what our bodies view as traumatic.
I have DD and Lipedema too. I'm really good at the "Guess your weight" game at Cedar Point. Its one small DD perk amongst many challenges.
I use vibration in am, take muscle relaxer, take quetiapine to sleep. Wear compression and do geentle stretches.
Carcinoid tumor is also called Neuroendocrine tumor, and flushing is one of the symptoms of a hormone producing tumor. I really hope, the lecturer is in a NET certified centre for regular checkups. It might return or spread, if not kept at bay.
I, too have a mass in my chest where a differential is either a pulmonary carcinoid or a pheochromocytoma. I have been observed for 4 years via CAT scans and it has not grown. I believe I have diverse Dercums as well. I also have MCAS. AS a result, surgeons classify open chest wall surgery for me to be high risk and not one has attempted a biopsy. Question for you...aren't you scared that each new lipoma is indeed a carcinoid?I see Dr. Herbst in June. Thank you very much for this interview. I had to skip this year's convention because of an unexpected surgery on my hubby.
I have dozens of lipomas. I started with one on my arm years ago and in the last 3-4 years they are growing all over my abdomen, arms outer thighs and rib cage. I'm only 35 with no kids. I have swelling in my ankles, pseudotumor cerebri and serious sleeping issues. I'm an terrified that I have Dercum's and don't know where to begin. I'm grateful for the information on the fatdisorders.org site. I hope I can get some answers soon.
My mother also has lots of them especially in lower rib area and on the side of ribs ,but she is much older,they are quite painful especially in cold weather.
It's like you are telling my story. I even have a big lipoma right where my bra goes too but on the left side. Drs always tell me "you're just lumpy"
Hi very thanks for your support
But i notice another thing , did you make a neck Mri to exclude klippker feil or cervical rib because of noticed short neck
I have the same dercum,s ,lipedema, cervical rib, klippler feil syndrome, hypermobile joints, leaky gut and lymphatics , i think that all these disorder is the same
Got it from my father.both parents have some harbacous skin oils and growth bother
I have mast cell, RA, heart disease. Thyroid removed
Neuroendocrine Cancer is what you have, Carsonoid is an out dated term. I am a PNet, Pancreatic Neuroendocrine Cancer, I believe I have Dercum too but find once doctors find one thing they stop looking. Both our cancers are the same kind just growing in a different spot of the body. You need to see a NET specialist, it can always come back, you need to still be monitored.
Is there a support group? Something in Tucson?
I think she just saved my life but no doctor even likes me so they won't believe me. I'm so sad about my situation, but I am glad to see this in 2024.
Wow how interesting
Is osteoporosis common in durkens?
Dercums and yes it can come with it. I have stage 4 Osteoporosis, Rheumatoid artritis, severe fibromyalgia and Multiple Sclerosis along with Reynaulds disease. I've also had reiters syndrome but it's dormant. I have a fatty liver and pancreas issues. During my hystrectomy my lymphatic system was nicked it started gushing out of my body in huge amounts. This stopped after 3 weeks. I had 3 lipomas one was removed over 30 years ago. The other 2 caused no discomfort and had no changed. I received 3 covid shots and boom they started growing all over. Anyway I suffer horribly. 2 years ago I fell down my basement stairs and burst fractured my L1. I could not get it fixed because of fragile bones. I suffer from severe foot issues. Anyway it's a horrible disease with very little help.
how do you avoid depression with this? I am still undiagnosed and from info I have found online it sounds like there is no cure for this. I do have pain in many body parts that is so severe at times it is debilitating. I have just learned of DD and Lipodema and I believe I have been suffering from this for over 15 years. Embarrassed and humiliated by my legs, life is so difficult and sad now because exercise and beach activities were once my favorite past times.
I have done my best to keep working with mine, I have even changed my career three times in line with my DD. I had my hysterectomy at the age of 33 yrs old. I have a lot a nerve pain and numbness down my left leg. I can't swim as I do not have strength in my arms. Not sure if that is down to the Fibromyalgia though.
Can i contact u
I had all that.