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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Thank you for your response and concern. I'm so new at this that I don't really know comparative numbers. Another issue is that I am on a pathetic Social Security payment schedule and don't want to have to ask for assistance. But I am grateful for having access to good care and resources such as this support community. One day at a time is my mantra!

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@nana120

Following your comments and any discussion to come, because I need knee replacement and I’m concerned about healing due to my CLL. I had an incident in 2019 from a dermatologist biopsy on my lower leg that took over six months to heal and left a bad scar. Prayers for your healing!

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Prayers for you for a good recovery. God Bless

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@cjweekley

Thank you for your response and concern. I'm so new at this that I don't really know comparative numbers. Another issue is that I am on a pathetic Social Security payment schedule and don't want to have to ask for assistance. But I am grateful for having access to good care and resources such as this support community. One day at a time is my mantra!

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One day at a time is right and stay in the NOW.

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@normahorn

I have stage 1 CLL (diagnosed almost 3 years ago) and am symptom free at this point.

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Glad you are doing good

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