I thank you for the opportunity to ask a question to you through this blog. Sort of a long question but hang with me if you can.
About 20 something years ago I developed pain in my lower right back. After a long time and finally an MRI. I had "arthritis". Well, years more, I finally was referred to a rheumatologist who officially diagnosed me with ankylosis spondylitis. It's a chronic illness that fuses the spine. Anyway, within the last year, I developed extreme pain in my left elbow. Within the last 6 months, it has spread to my legs, so much so that it is hard to walk and my neck, my shoulders, wrists, knees, hips, well pretty much every single part of my body. It feels 24 hours a day like my bones are eating themselves away. I don't know how else to explain this pain. Consistently my labs show high WBC, and other inflammatory markers. A previous CT scan showed enlarged spleen. (Dr. didn't even say a word) only reason I know is because I got a copy of the report. My recent labs show very high sed rate, crp, wbc and basophlis high. I have been extremely tired this last week and falling asleep on the way to work and hard to keep my eyes open. Also, my gums bleed when I brush my teeth, and my teeth are very sensitive. This started about 6 months ago (bleeding). My Dr. did a blood test and found Vitamin D - low at 17. Before that visit, is when the pain in my legs were so bad, and I was so tired, that blood test showed anemia. I had to have injections every day to get it back to normal.
My test was taken one week ago and no Dr. has called me back or sent a letter even that they reviewed it. Might be a slip up- I just got done sending a email to my Dr. for a referral to a hematologist. Nowadays, I strongly believe we have to be our own advocate. When I mentioned how much pain I am in all over in my body at my appt. the Dr. said I probably have fibromyalgia and will most likely review the labs as inflammatory due to the A.S. But, in my heart I feel something else is going on as well. My research led me to Chronic myelogenous leukemia.
So my question to you is: How long did it take to get a diagnosis? Do my symptoms sound like it could be CML? I just want some insight. I am dying inside and I need hope. IF it is only my disease AS there is no cure and I will only get worse.
Thank you for a little insight.