Anyone else experiencing these symptoms with CLL diagnosis....?

Posted by karmas1up @karmas1up, Feb 9 7:04pm

I was diagnosed with CLL last summer however upon further review of my medical records and CBC results found that my CLL likely goes back 7 years or more and was not put together. For the last three years I have been experiencing severe and painful flares of edema in my legs, feet, arms and hands. I have progressively painful daily joint pain and pain all through my legs. I have a negative rumeatoid arthritis test as well. I have lost a significant amount of my hair (about 2/3's - in the last couple of years) and continue to lose significant amounts. I have easy bruising and am constantly exhausted - I am not young but @ 38 I should have more energy than barley getting through a work day. I have spoken with my Drs about these symptoms and am in the "watch and wait" faze of the disease. My Dr has no explanation of most of my symptoms other than regular CLL and then the others he's stumped on - also overworked in my experience. So I thought I would reach out to other patients and specialist to see if I'm alone in my struggle. Thank you for any help...

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@normahorn

The third blood test was flow cytometry.

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I did have the flow cytometry done. Honestly my one and only appointment with my oncologist lasted all of about 6 minutes and he told me what I had but it was chronic there was no cure but treatments later on and that he would see me in for months. I have been unable to get their office to schedule an appointment since (there was a mix up with insurance for the first appointment and I think they are avoiding scheduling me until I pay off the first bill).

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