Dear Dr. Roach: My father suffers from carcinoid syndrome, and I was wondering if it is hereditary. For many years now, I have gotten a strange numb feeling in my mid-abdomen region that comes and goes. At other times I have a mild, dull pain in the same area. I also have been experiencing a lot of gastrointestinal issues for the past several years. I have had many tests done, which, for the most part, have been inconclusive. They did find that I have a hemangioma in one of the lobes of my liver. I quite often feel bloated and have bouts of diarrhea, and my stomach is very loud and noisy.
Dear E.H.: Carcinoid syndrome refers to the symptoms caused by the many active substances released by a carcinoid tumor, which usually include flushing — a noticeable reddening of the skin — and diarrhea, but also can include other symptoms. Carcinoid tumors are relatively rare, but their incidence seems to be increasing. They most commonly occur in the small bowel, but can be found in other body locations, including the lung.
There is a condition called familial cancer syndrome (the National Institutes of Health is currently recruiting study participants), but this represents only a small percentage of carcinoid tumors. They can occur as part of an endocrine disorder called MEN-1.
Because the symptoms of carcinoid can be so variable, and with your family history, I would recommend that you consult with a physician who is experienced in carcinoid syndrome. Abdominal pain and numbness are vague symptoms that are not common to carcinoid. They may make alternate diagnoses more likely, such as Zollinger-Ellison syndrome, a gastrin-secreting tumor that causes ulcers and diarrhea.
Dear Dr. Roach: I’ve been diagnosed with a rare autoimmune disorder, scleroderma morphea. It’s the inside-outside type, and I take 7 milligrams of methotrexate per week and 150 milligrams of prednisone per month. The pain often is intense in my hands and lower legs. My family practitioner and rheumatologist have told me now, after several months, that this is all new to them and perhaps I should attempt physical therapy and look into some trials that could be going on somewhere. It’s very confusing to me. I’m 78 years old and have had no joint surgeries, cancer or heart problems. I’d like to stay that way.
Dear S.D.: “Morphea” is another name for “localized scleroderma,” which, unlike systemic sclerosis (scleroderma), does not affect the internal organs. So I’m not sure what you mean by “inside-outside” type. The treatment you are receiving is more common for systemic sclerosis than it is for morphea, which usually is treated topically, with medicines applied to the body surface — steroid creams, vitamin D and a powerful immune suppressant, tacrolimus. Phototherapy is another treatment option; it uses UV light.
Most cases of morphea are mild and resolve within three to five years. However, some people have a more severe and progressive disease. If treatment is not effective and the skin disease is severe, methotrexate and prednisone often are used. Physical therapy is, as is so often the case, extremely helpful in improving function.
Since your family practitioner and rheumatologist are out of their depth (I don’t mean to disparage them; in fact, I give them respect for being honest — nobody knows everything), I would find someone with expertise in this area, most likely a dermatologist and a rheumatologist at a teaching hospital.
Email questions to ToYourGoodHealth@med.cornell.edu.