hi...
symptomatic for over 3 years. "Possible T cell LGL" says 3 docs including hemo/onc. No bone marrow test yet as it has not been offered and I am not sure it would matter anyway?????
polyclonal t cells keep rising. (Over 5000 now for 6 months.) had another test done... "small t cell clones against a polyclonal background".
immune compromised. no reaction to pneumovax... fatigue and low grade fever for over 3 years. lost weight for a while now stable.
NO autoimmune dx -- tests all negative. Symptoms include: joint pain, muscle weakness, fatigue, soft tissue pain, foggy brain and memory problems. flushing and night sweats. EEG shows "wicket spikes" heart murmur... Immune complexes in blood, protein and blood in urine -- kidneys and bladder fine -- no tumors. (blood is transient - trace to 2plus.)
For WAY too long (Over a year) I was told these "vague" symptoms were due to stress. CFS and FMS was dx. "Nothing we can do about it."
Finally I saw a great immunologist. did b and t cell enumeration study and found high T cells. tracked for a year and continue to rise as IgM was low and IgG varied. Subclasses decreased in the year as T cells increased. Last count, NK in B line percentage had decreased.
Hem/onc said it takes 3 years for T cells to clone and this is very, very rare. I want, I need, I would LOVE anyone that might help with similar dx, or situaltion, or professionals that might know more about T cell LGL leukemia.
Thanking you in advance for any thoughts, links, or professional information.
Em
PS On another subject... my best friend is dying of ovarian cancer. She kept going as if she did not have cancer. Chemo, TPN, stiff upper lip... " She did not want to talk about it with others and did not get support from others (like this). It was her way. She burned the candle at both ends -- bright-light for a shorter time, I think.
She has had a real hard go of it for the last 2 1/2 years. After 2 years of not-working-chemo, she stopped.
And you know... this was her way. She may have lived a year longer if she did it another way? Maybe not... But "The c-word" was not allowed into her LIFE. It "just" took over her body.
I love her. And I have learned a lot.