September 3, 2003

sykkelThis morning was spent going through some of my medical test reports. I need to make some decisions regarding my non-existent medical care. How I will go about finding a medical doctor who will take the time and make the effort to help me find some answers is beyond my comprehension. I do know that I cannot go on much longer like this. Coping on a daily basis with the constant fatigue, pain, nausea and dizziness is no longer an acceptable option.

I read through a letter sent to Squirt by Ding-A-Ling on January 18th, 2002. Near the end of this letter, Ding-A-Ling writes and I quote, “Her fluid retention is most likely due to isolated right-sided heart failure, without left-sided heart failure. This may be due to cor pulmonale or previously unrecognized lung disease. The differential diagnosis would include obstructive sleep apnea, COPD, multiple pulmonary embolism, or valvular heart disease that couldn’t be due to her obesity.” .Don’t you just love the way doctors refer to an overweight person as obese?  After the tests were completed, it was obvious I never had right-sided heart failure, sleep apnea, COPD etc. etc. In the same letter Ding-A-Ling wrote the following, “With regards to the proximal muscle weakness and tiredness, the differential diagnosis could be connective tissue disease or polymyositis. We recommend an ESR and CK.”   I did have both these tests done on January 14th, 2002, the same week that the letter was sent.  My ESR was 54 (normal ESR levels are 1-20). This was not the first time that my ESR levels were over 50. Squirt, believing I had sleep apnea regardless of the test results, did no further investigations to see if I had connective tissue disease or polymyositis.

After re-reading this letter and paying closer attention to Ding-A-Ling’s mention of polymyositis,  I decided to do some research on this disease.  I found the following information on the Mayo Clinic site at this link:  http://www.mayoclinic.com/health/polymyositis/DS00334 .

Polymyositis (pol-e-mi-o-SI-tis) is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy — one of only three such diseases.

Polymyositis can occur at any age, but it mostly affects adults in their 30s, 40s or 50s. It’s more common in blacks than in whites, and women are affected more often than men are. Polymyositis signs and symptoms usually develop gradually, over weeks or months.

Remissions — periods during which symptoms spontaneously disappear — are rare in polymyositis. However, treatment can improve your muscle strength and function.

 Next week is a new beginning and hopefully I can muster enough righteous rage to embark on another search for answers.
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