DD disability and symptoms

Dercum's Disease
#1

Hi all Dercums sufferers,

Has anyone filed and won their disability yet? I originally filed Dec. 05 and I am still fighting it. The problem is my attorney can’t find a code for dercums disease in the social security health book. Any suggestions is very welcome. Also has anyone suffered from low oxygen? I have a whole team of doctors that cannot figure out why my oxygen is so low. Its up and down within seconds. Crazy.

I have been on 2 liters of oxygen for a year and a half now. I am 38 years old. Anyone want to talk, chat or email me contact me please.

Thanks and take care,
Linda

#2

DD tumors not only wrap around nerves but they wrap around blood vessels also. Sounds like you might have some wrapped around arteries. Perhaps movement causing the vessels to constrict thus lowering oxygen levels? Something for your Dr to look into. Could be VERY serious.

#3

Question: Have you had a CT of your chest? If so, did any “nodules” show up in your lungs or mediastinum (near heart)?

This sounds like a very serious problem. Also, please relay to your SS attorney that while there may be no specific SS code for DD, the World Health Organization recognizes this disease and the diagnostic code, according to WHO (per ICD-10), is the number of E88.2.

Benita

#4

My mom has been talking to all the people involved in the rehab center she goes to for COPD and one assistant told her of a woman who had one growing around her lungs and it was removed and it grew back and now is no longer operable…so even if you remove it I guess you stand a chance of it growing back…

#5

I received my disability after 22 months and an attorney, but I won it on thyroid eye disease and fibromyalgia and cushings syndrome from taking PREDNISONE! My dx of Dercum’s came a few months before the decision. But, I am sure I’ll stay on it for life with the Dercum’s. They will turn you down always the first time around, They will make you go to their doctors and probably turn you down the 2nd time. Then, you have to wait for a hearing with a judge. I was 2 months away from that hearing, and per my attorney, after I had turned 50, it places you in a higher risk group, and I believe with it all, I got approved before the hearing! If you don’t have an attorney, GET ONE! They will take 25% of your back pay, which they do go back and pay you but there is no up front money to pay the attorney!

Hope this helps!

Judy

#6

I filed before but was turned down twice but incorrectly I thought it was athritis. I have an attorney now so I hope it goes better…Do they even have Drs familiar with DD working for disability??? What good does it do being sent to a doctor that knows nothing about the disease?? I am just lucky I found an internist with an open mind but it helped that he knows about the lipomas and the eye doctor he sent me to found two more inmy eyebrow…And I have an appointment with a plastic surgeon to see about removing them or not…

#7

I’m not sure what diagnosis actually caused me to be accepted for disability benefits, but I applied and was approved on the first try.

I worked, out of sheer bullheadedness, with much pain and agony, until I was fired. They said I could no longer perform my job as required, due to my condition. I got unemployment benefits for 6 months. A month before the end of those benefits I applied online for disability and my first check came within three weeks. That was just over 2 years ago.

Both my physicians, my PCP and my dermatologist, both committed, caring men who’d never treated Dercum’s before, had affirmed that they’d do whatever necessary to get benefits approved. I never asked what diagnosis they gave, although I’m sure Dercum’s was at the top of the list.

me< (aka Cindy)