Undiagnosed Conditions

[Bornsickie]

I have had these lumps for a number of years. The last few years they have gotten hard inside and have become very painful. My ROM is limited, as is my neck, shoulders, and arms. These are normally about 4-6 cm. but, can reach up to 8cm with swelling around my throat, causeing breathing and swollowing problems. A couple of Dr.s have looked at them and cited there was nothing to worry about. But I am worried because they hurt so badly! They have never gone away and no ammount of antibiotics helps.
Any suggestions, ideas, or thoughts you have would be greatly appreciated.

[LisaV]

I'm not a doctor, but 6 years ago I had a lump on the left side of my neck that wouldn't go away. My family doctor sent me to an ENT, who said he could remove and biopsy it if I wanted, since it wasn't going away. The pathology on that lump came back benign (no cancer). Then in November of '07 I noticed another lump, near where I'd had the other one removed. I ignored it, thinking it was the same thing as six years ago...just a benign lump. Then it got bigger; and I noticed more lumps. The glands under my jaw were swollen almost to the size of walnuts, and my neck looked huge. I had an almost constant sensation of being choked, or of having food stuck in my throat. I finally went to my doctor in March, and she ordered blood tests and a chest X-ray, and put me on antibiotics. The tests were all negative, but the antibiotics didn't shrink the lumps, so she ordered a neck CT and sent me once again to an ENT.
He viewed the CT with me and did a fine needle aspiration of one of the lumps. Then he ordered more blood work and an ultrasound of my thyroid. All the tests came back fine, even the fine needle biopsy showed no carcinogens. He wanted to do an excision of one of the lymph nodes though, to have it biopsied and make sure it wasn't cancer. He ended up removing two of the lumps, and a week later I got the results of the biopsy...Non-Hodgkin Lymphoma. If he hadn't done the surgery, but just gone by the blood work and needle biopsy, I wouldn't have gotten the treatment I need. I was already Stage III. Please keep pushing. Go to a good ENT. If the lumps haven't gone away and don't respond to antibiotics, ask for a biopsy. I wish you the best!

[Bornsickie]

Dear LisaV,
Thanks so much for taking the time writing to me. You have a double sided edge here. I wish you the best care possible.
I have been trying for 18 years so, now I don't have any "trying" left in me.
Whatever happens... happens. I'm too ill to care anymore.
Over the years I have looked and looked for these things on the web and I finally found them! You may be interested in this as well!
Decrums disease. Or otherwise known as Adiposis Dolorosa.
It is a non-cancerous growth that forms in the layers of skin, fat, muscles, tendons, in joints, pretty much anywhere on your person.
I have one on each ankle, one on each knee, one on each side of my neck, and one under each side of my ribs, one on each side of my nasal passages.... plus a swollen liver and spleen.
They are extremely painful to have to live with. Plus the whole other realm of medical problems that accompany this disease.
Only a specialist can help. Without insurance.... there is no way anyone is going to help me.
There is another form of this disease... its called Madelungs. This is basically the same thing only, you can have lymph nodes swell inside your chest and cause a heart attack or collapse your lungs... But, I wont be able to find out which one I have until.... its too late.
I wish you the best and hopes that your treatment is just what you need to recover from Non-Hog. You are in my thoughts and prayers.

[Bornsickie]

I thought I would give a small update. I have written to over 200 hospitals, Dr.s etc. to no avail. At first they want me badly... then when I tell them I dont have insurance they drop me like a hot potato.
I am now up to 61 painful, disfiguring, lumps on my body.
I have come down with the Flu and believe it turned into pnemonia at this point. I cannot afford to go to the Dr. so I am taking OTC meds. They make me sleep.
My hubby lost his job and we have applied for food stamps. Not my proudest moment but, one that is badly needed.
I still believe I have the rare disease of Decrums aka Adiposis Dolorosa. I just wish I knew If these lumps under my ribs are Madelungs disease or not. It would be nice to know if I could drop over dead at any time so I can get my "house" in order. Which I have been slowly working on.
I sent photos to a noted specialist asking if it was possible to have 3 different types of nodes with decrums? the reply ... he/she sees 3 different types in the photos. And that it is possible to have 3-4 different lumps which is rare. Hmmm, Decrums is rare to begin with... now, I have 3 different types which is even rarer.....
Living wiht the pain 24/7 is getting intorrable. I pray and pray that I dont wake up because I just cant take it much more. I had to cut back on the Aleve to just 4 every four hours instead of ten. Its killing my stomach. So the pain is even worse now. And I still have to deal with all the other medical problems as well. Along with thyroid problems too boot.
I dont want pity. I am not looking for that at all. I just want to document some of the Decrums symptoms and a little of my life as well.
If you want to add your Decrums story to mine... please feel free to do so.