Early Days - Diagnosis

I had had an ongoing problem with diverticulitis which, when inflamed, caused me to have severe pain in the lower left side of the abdomen.  For several years I had always carried antibiotics with me and was under the doctors orders to start taking them as soon as the pain appeared.  I was also told to take the next 10 days of antibiotics if it was still hurting after the first 10.
I found myself in this situation in 2001 the day before we were to leave on a yacht charter in the Grenadines.  My abdomen was so sore that I thought I better check it out before we took off and went to see my family doctor.  While in his office he set me up with an appointment for an ultrasound downstairs and I did this before leaving.  Half way home I got a call on my mobile phone telling me to go straight to a hospital where there was a surgeon waiting to see me.  Apparently they had seen something in the ultrasound that was potentially life threatening and wanted me to see a surgeon right away.  On arrival at the hospital I was whisked into a small side room where a doctor came in and palpitated my belly before sticking a needle into the area and drawing out some liquid.  The colour of the liquid prompted him to say that I had an infection that had turned into peritonitis and was extremely lucky and admitted me to the hospital post haste.  I was later told that had I flown to the island of St. Vincent as was the plan and sailed away on the charter I could have died before being able to get to a medical facility with the required resources to help.
This has nothing to do with my IBM but did lead to several weeks on my back with heavy doses of antibiotics, some IV in the hospital and some at home until enough poison had been pulled out of my abdomen to allow them to do a colon resection.  It was because of this forced inactivity that the muscle loss became apparent when I could no longer walk up stairs.
I found myself pulling on handrails, lifting a leg up to go up a step and then having to push down on the knee to help lift myself up. I needed a cane to walk and going down stairs or walking down a slope became frightening. I was too young for this being only 51 and in good shape at the time.
My family doctor referred me to a rheumatologist who in turn referred me to a neurologist who diagnosed Inclusion Body Myositis.  I was sent to a plastic surgeon for a muscle biopsy and then on to another neurologist for a second opinion which was given as Poly Myositis with a few Inclusion Bodies.  After a few months under her care I had to stop seeing this neurologist and stepped back to see the rheumatologist that I had seen first. I told her about my problems dealing with both of the neurologists that I had been sent to (which I will detail in another post) when she found me a rheumatologist in a downtown Toronto hospital that had a reputation for ending up with all the IBM patients.  This lady is an amazing doctor and person who could finally talk to me sensibly about the disease and give me some hope going forward.  Here I am almost 20 years later and still most doctors that I see don't know what the disease is and how it affects the body.  I am still under her care today and can't thank her enough for helping me to deal with the constant changes and issues. She recently told me that she is making plans to retire and all I can say is that she will be missed by all her thankful patients. With her and after having another pathologist review the biopsy I got a definitive diagnosis of Inclusion Body Myositis.  The rest, as they say, is history.