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Dercum’s Disease: Looking to connect with others

Posted by vowelmistress @vowelmistress, Jun 13, 2022

I am having pain in my feet and ankles. I do have dercum’s and I am wondering if the lipomas in my legs can cause this? Also are there any surgeons in the Eau Claire area who specialize in liposuction for dercum’s patients?

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c3p0 | @c3p0 | Dec 22, 2024
In reply to @colleenyoung "@ellenbret, you may wish to contact Mayo Clinic in Phoenix to inquire. Here is more information..." + (show)
@colleenyoung

@ellenbret, you may wish to contact Mayo Clinic in Phoenix to inquire. Here is more information about treating lipomas and care at Mayo Clinic.
https://www.mayoclinic.org/diseases-conditions/lipoma/doctors-departments/ddc-20374475
To find out more, you can contact Mayo Clinic either online or by phone. See details here http://mayocl.in/1mtmR63

Is this the new drug you're referring to (CBL-514)?
Novel Fat Reducing Drug Gets Fast Track Status for Dercum Disease https://www.empr.com/home/news/drugs-in-the-pipeline/novel-fat-reducing-drug-gets-fast-track-status-for-dercum-disease/

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Hi Colleen,
I have contacted Mayo clinic for help with Dercum's but they told me it is red target which means they have no treatment for the disease. The only place I know of for specific treatment for Dercum's is in Touscon. Dr. Karen Herbst. I am trying to get approval from insurance to see her. It is a long way for me but I feel it may be worth the trip to see her.

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dmmeyers62 | @dmmeyers62 | Dec 25, 2024
In reply to @colleenyoung "Hi @vowelmistress, lipomas are a symptom of Dercum’s disease, but not the cause. “ Doctors aren’t..." + (show)
@colleenyoung

Hi @vowelmistress, lipomas are a symptom of Dercum’s disease, but not the cause. “ Doctors aren’t sure what causes Dercum’s disease. In most cases, there doesn’t seem to be an underlying cause.

Some researchers think it may by an autoimmune disorder, which is a condition that causes your immune system to mistakenly attack healthy tissue. Others believe it’s a metabolic problem related to not being able to properly break down fat.” https://www.healthline.com/health/dercums-disease#causes

@pamelars60 and @hippygrandma both have mentioned that they have Dercum’s disease along with several other conditions, including fibromyalgia, and may have some experiences to share.

Vowelmistress, have you considered inquiring at Mayo Clinic Health System, Eau Claire to find a specialist in Dercum’s disease?
https://www.mayoclinichealthsystem.org/locations/eau-claire

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I have celiac disease and dh rash Also other autommune diseases and just had lipnoma taken out of my knee. It was almost 15cm . Dr very worried about cancer but wasn't He told me watch all the other lumps I am getting. Also celiac is not undercontrol my numbers were off the chart and instead of going down after being gluten-free for almost 4 years it went higher. Question I have if this could be causing this.

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etboston | @etboston | 1 day ago
In reply to @c3p0 "I was all set for this trial. (CBL-514) Had my paperwork in and e signed and..." + (show)
@c3p0

I was all set for this trial. (CBL-514) Had my paperwork in and e signed and was then told I was too old. That took all the wind out of my sails. I am starting all over again with another plan of attack but there is little else I can do. I wish you luck in your journey. This is such a frustrating disease due to the fact it is so unheard of and nobody I've seen seems to worry about it.

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I was diagnosed with DD last year. The dermatologist with Kaiser recommended Ozempic. That’s what I have been taking for the last 2 months. I am 54.

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1 reply
c3p0 | @c3p0 | 1 day ago
In reply to @etboston "I was diagnosed with DD last year. The dermatologist with Kaiser recommended Ozempic. That’s what I..." + (show)
@etboston

I was diagnosed with DD last year. The dermatologist with Kaiser recommended Ozempic. That’s what I have been taking for the last 2 months. I am 54.

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Has it helped your symptoms? Also is it doing anything to shrink the lipomas?

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2 replies
c3p0 | @c3p0 | 1 day ago
In reply to @c3p0 "Has it helped your symptoms? Also is it doing anything to shrink the lipomas?" + (show)
@c3p0

Has it helped your symptoms? Also is it doing anything to shrink the lipomas?

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Is that just for weight loss?

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1 reply
etboston | @etboston | 1 day ago
In reply to @c3p0 "Has it helped your symptoms? Also is it doing anything to shrink the lipomas?" + (show)
@c3p0

Has it helped your symptoms? Also is it doing anything to shrink the lipomas?

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Yes it has helped to shrink them.

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1 reply
etboston | @etboston | 1 day ago
In reply to @etboston "Yes it has helped to shrink them." + (show)
@etboston

Yes it has helped to shrink them.

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I still have joint and muscle pain, along with other symptoms, but the large lipomas on my thighs did shrink.

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c3p0 | @c3p0 | 1 day ago

Thank you for the quick reply. I'll mention it to my doctors. I wish you the best of luck in your struggles.

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etboston | @etboston | 5 hours ago
In reply to @c3p0 "Is that just for weight loss?" + (show)
@c3p0

Is that just for weight loss?

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It was prescribed for weight loss, but my lipomas on my legs have shrunk.

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