AboutTina Expertise I can help on all aspects of the condition, treatment, support. I cannot diagnose but only give my personal expertise, and refer you to others who can help. I am in touch with doctors, therapists, and professionals on a regular basis. I can help with disability issues pertaining to lymphedema or cancer.
Experience 13 year cancer survivor, Lymphland Support group owner, Owner of Lymphland.com website, writer for Butterfly Gazette, forums coordinator for ELymphNotes online lymphedema magazine, patient and advocate for 10 years, Yahoo answers advanced level answerer.
Organizations Lymphland Support Group Owner, Lymphland.com website owner, National Lymphedema Network member, American Society of Lymphology member, ELymphNotes forums coordinator and writer, member of many online support groups. Rainbow Bridge Pet Loss Grief Counselor, former bank loan rep, pharmacy ass't
Education/Credentials college graduate, volunteer in pet loss grief counselling.
Expert: Tina Date: 12/13/2007 Subject: Auto-immune disease of father
Question QUESTION: My father is a very ill man. In the early 90's he started having severe pains in his forearms and wrists. The doctor he was seeing at the time recommended putting in a plate. As he lay on the OR table, the surgeon cut open his arm and it immediately erupted with puss. The surgeon took a sample of the puss, stitched up the cut, and called a rare-disease expert. The expert tried to culture the puss to see if it was the result of an infection, but after a week of incubation, nothing was growing. So he determined that it at least wasn't from anything that happened recently to my father. A few years later the physician my father was seeing was attending a conference, and just happened to come across a seminar about what is wrong with my father. The doctor hosting the seminar said that only about 15 people in the United States exhibit similar symptoms, and that it was either the result of his immune system attacking his bones, or an unknown disease that was attacking his bones and his immune system wasn't doing anything about it. The seminar was almost 10 years ago, and my father has seen quite a few different doctors since then, but no one has been able to tell him anything more about what is wrong with him, or even what the name of the disease is. He has since developed diabetes, is clinically depressed, and now his liver is failing. I was just curious if you had ever encountered anything like this, and if you had what it is exactly, or if the disease even has a name. Also if his health problems now are related to it, and if its genetic. I also know that he was in the Vietnam war, and was discharged after he fell into a punji stake trap. He told the rare disease expert about this but he seemed to think that it wasn't related.
As I said before, his bones and cartilage are turning into puss, he's in constant pain which he is taking morphine for. Liver failure, depression, diabetes, swelling of the feet and ankles, and that is all of his symptoms that I know of.
Thank you
ANSWER: Hi Sean
I'm sorry your father is having such a rough time. The puss part was a red flag to me and I am wondering if he has Psoriatic arthritis, you don't need to have psoriasis to have it either, it can just develop in the joints and bones and if not treated such as it sounds your father has not been properly diagnosed, it can affect the internal organs such as the liver. Methotrexate, Sulfasalazine, antimalarials, azathioprine, cyclosporine, mycophenolate mofetil, leflunomide and etretinate, etanercept, infliximab or adalimumab, and there are alot more different medications, sometimes chemotherapy is even prescribed. They also use ultraviolet light therapy or radiation sometimes.
My own father has this, he went years and years with no treatment and the bones in his left foot are gone. He was in the army, World War ll.
My father just found out the problem in 2003 when he was referred to a rheumatologist who was new to our area and just starting up. The newer doctors have had more training in the autoimmune problems than some of the older established doctors. My fathers fingers, arms, feet, toes would split open from extreme swelling, and leak pus.
I can't honestly say that this is what is wrong with your father, but it would be worth it to mention this to your doctors and get him a referral to a top rheumatoid doctor.
---------- FOLLOW-UP ----------
QUESTION: You have no idea how much I appreciate this information. I do know however that my father has seen a rheumatoid doctor, but I doubt he can be referred to as a "top" doctor. I also had a question about the liver problems. When my father was seeing the doctor that attended the seminar, he checked his liver and said it was fine, then just last December he spent 3 months in 2 different hospitals for his liver failure. I just thought that the speed of the failure was strange and was wondering if this disease is responsible. I also know that he has undergone chemotherapy, but that again was in the early 90's and it didn't seem to help him. Thank you very much for your help.
ANSWER: Hi Sean,
Just another question was he ever checked for Scleroderma? I would try getting him into a very good doctor or even a teaching hospital because they have the top notch equipment and drugs faster than any other doctors many times. The disease could be responsible for attacking the liver, other auto-immune diseases do such as lupus, and Paget's. Scleroderma involves thickening, inflammation, and fibrosis, and the immune system attacks the body's tissues.
---------- FOLLOW-UP ----------
QUESTION: Thank You very much for all your help so far, but I have one more question. Aside from the bone loss , my father has also lost all of his teeth. They would simply just break or dissolve down to the root. And his gums are currently swollen and infected. Could this be also related to the psoriatic arthritis, or the other diseases you mentioned. Also his pain seems to be whole body pain, and its difficult for him to determine at times if its tissue or bone and joint related.
Answer Oh my, Sean, it almost sounds like he has Osteomyelitis, has anyone ever mentioned that term to either of you? how long have the teeth been a problem? Has he ever had a MRI, cat scan, bone scan, ERS, and CRP test? Putting the teeth symptoms into play with the bone issues and pus, it is pointing more to the osteomyelitis which could have even started back with the stake trap with a puncture to the bone.
