I get the same thing for my Crohn's: try this diet or that clinic or the other drugs. I hear how "others were cured" all the time. I also get the "but you look so good" . . . even from my doctor!

What I have begun to tell them is, you know how your doctor gives you statistical percentages for response to treatments, etc? Like "85% of those treated thus and so will have a successful outcome" or "95% of those who undergo this treatment will remain in remission?" I simply tell them my doctor is sad to tell me I am in that 5-15% that are NOT successful. It is as if they simply refuse to believe that there are those for whom the range of treatments will not yield positive results. On our medical charts it is listed as "Prognosis: poor."


And now I am going through this all over again with what my neuro is calling transverse myelitis unless and until he finds any more evidence for MS. So if I never am diagnosed with MS, but have many of the same symptoms and issues . . .what do I tell those who ask? I still have a set of symptoms with no cure, which will progress or continue to cause rather unpleasant symptoms, and which pretty much messed up my golden years.

Had my severe ulcerative colitis actually been colon cancer, causing the same loss of my entire colon, explaining would have been simpler, and surgery would have been more or less curative. Same with my central nervous system . . .



I hear you loud and clear. I actually had a gastro cancel my colectomy on surgery day because "I looked good." I fired him immediately, called my surgeon and rescheduled, asking him to take over my care. In my life there is no room for egos driving my medical care . . . mine or anyone else's! It is through either illness and/or financial gain that you will find out who your friends ARE NOT!