First, Sarah, I hope you’ll forgive me for making my reply to you into another entry; it’s just that your comment to my previous post asks a number of pertinent questions I’m more than happy to answer. I’m sorry that you also have to be a member of this club, but just know we have company.
Secondly, I’ve most definitely had my share of GI trouble—secretions, pain, a terrible mess, and for a long time I was led to believe I was experiencing a host of seemingly separate troubles. No doctor ever suspected anything like MEN 2B in my case. And yes, they dismissed what I said as well. My current endocrinologist also said it was rare to see anyone live this long (I’m now 53) with a disease that normally kills during childhood. We’re left to ponder some very large questions, but in the meantime:
I have many of the same symptoms—cafe au lait marks, fatigue (which on some days is absolutely disabling), and of course there are all these tumors. The thyroid is the biggest issue because it can turn malignant; I’m having mine removed for that reason, prevention, also I have a tumor in the neck that causes me choking/breathing problems. If you have MEN 2B (the blood test will confirm it), it’s also possible your rib cage and spine are barnacled with tumors. A nasty thought, I know; but these tend toward benignity. An MRI will of course reveal this. I suspect that’s the case for both of us, unfortunately; that would explain much of the pain you’re feeling.
I only found out about MEN 2B by accident. I called my former doctor at Cleveland Clinic, where they’re doing some cutting-edge (sic) research on this illness; Dr. Burke said, “I thought you were calling me to say you’re having thyroid problems.”
“What about the thyroid?” I was clueless.
Then she began to explain it to me. All the ganglioneuromas in my colon were symptoms of this larger illness. There was nothing to do at that point besides go and get checked out. Turns out she was right, and she quite likely saved my life by telling me that.
So: do please have the thyroid checked as well, OK? The reason is: quite likely the other tumors, while serious, are less likely to turn malignant; the thyroid is another matter. Of course, once said malignancy gets into the lymph nodes it proceeds to the bones and marrow, and nothing can be done about that. Now, your thyroid might be clear. I certainly hope so. But it’s important for me to pass that along to you, just to be certain.
I fully understand how this can disable. Many days I have the same problems, be sure. It can be frustrating because, unlike many other illnesses, this doesn’t make itself obvious to others. In fact, often I feel it’s a fairly invisible disease. It’s only when the cramps start, etc., that people see any manifestation, and then it must appear to them as something else altogether.
Finally, I wish you good health, and success every day in dealing with this. All any of us can do is wake up in the morning and try. If other people don’t quite understand, it’s their problem. Please keep me posted as to your progress, all right? All Bright Blessings, and if you have any other questions I hope you continue to ask here; I’m not a doctor, only a patient, but I can surely answer questions from that perspective.