Has anyone lost fingers/toes to B cell antibodies impacting Platelets

Posted by wheegie @wheegie, Jun 19 11:08am

I had all my fingers & one toe amputated due to B cells creating antibodies that impacted my platelets & stopped my capillaries from my digits. It immediately caused my fingers & toes to turn purple, then black. My legs were impacted with large blisters. The tip of my nose turned black & my lips swelled. This was not identified in the numerous blood tests. It was found in a bone marrow biopsy. I've had numerous doctors run tests on me & no one can understand why my body reacted the way it did. I've had 5 Rituximab infusions. Waiting for a 3rd bone marrow biopsy in Oct to determine if the B cells have been "put to rest". Hematologist stated they found CLL clones in the marrow. Has anyone experienced this? I'm at a total loss as to why this happened.

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myoga | @myoga | Sep 23 7:21pm

I'm so sorry that you've experienced such horrible effects of CLL. I pray that you recover well and have good results. Never loose hope. Miracle happens to everybody. Best wishes! Hugs.

wheegie | @wheegie | Sep 24 9:16am

In reply to @myoga "I'm so sorry that you've experienced such horrible effects of CLL. I pray that you recover..." + (show)

Thank you for your very kind words. My doctors are still trying to determine why this happened to me. They suspect it may be cold related.

suetex | @suetex | Sep 25 7:06pm

What an awful thing to have happen! And with little understanding of Why. I have to ask were your platlettes made higher or lower by the antibodies? We are all praying that you get to the bottem of this fast!

wheegie | @wheegie | 6 days ago

The day this tragic event occurred, Dec 2024, my platelet count was within the normal range of 172. I was tested everyday in the hospital, sometimes more than once. As of my last platelet count on May 26th, it was 189. Prior to all of this, during my regular yearly examine in March 2024, platelet count was 169.

My medical team couldn't find anything in any of my blood tests. I was tested for every disease under the sun! The issue was found after my first bone marrow biopsy. I'm scheduled for my third bone marrow biopsy Oct 14th along with more blood tests.

Thank you for your kind words, it means a lot to me.

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