Were you misdiagnosed before being given ... - Beyond Psoriasis
Were you misdiagnosed before being given a final diagnosis of psoriasis?
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I have CLL and skin flares that have been diagnosed numerous times, biopsies are often vague, mentioning Plaque Psoriasis, Eczema, drug related rash, CLL cells in the skin and now Mycosis Fungoides. The flare ups appear with multiple symptoms.
Hi lankisterguy , sorry to hear you have CLL amongst other things.I hope you won't mind me asking if your skin conditions occurred before or after CLL diagnosis ? The reason I ask is because I've had psoriasis for 27 years now & it has come & gone of it's own accord it seems. Four years ago I had a Squamous cell Carcinoma skin cancer removed and since this time I've been concerned that my lymphocyte count on every blood test has been elevated but my total white blood count has been in range & they are observing my Monocyte Eosinophal & platelet counts. My psoriasis has been in constant flare for four years too which is not typical for me.
If your ALC / lymphs are high but your WBC is normal, then your ANC / Neuts are likely at the low end of normal.
There is a condition called MBL (Monoclonal B Cell Lymphocytosis) where some Lymphs are cloned CLL cells but they don't grow fast enough to cause problems. See
cllsupport.org.uk/cll-sll/s...
or ncbi.nlm.nih.gov/pmc/articl...
Studies have shown that MBL is very common indeed with up to 3% of normal blood donors over the age of 60 having MBL and we now know up to 50% of people age >90 have MBL!!! .... we now know that in any given year only 1-2% of patients with MBL progress to CLL
If your ALC stays stable, no further diagnosis or testing is recommended. If it climbs steadily well above 5k, then a Flow Cytometry test may be ordered to see which kind of Lymphoma is creating those extra Lymph cells.
I hope you never need to deal with CLL.
Len
My skin problems started in 2007, and my WBC was ~16,000 in early 2008, so they likely started together- it just took a while for the WBC to get out of range and get me referred to a hematologist for the deeper investigation and Flow Cytometry test to yield the CLL diagnosis. My skin flares the worst when I am in treatment for my CLL and when the CLL is progressing before the CLL treatment starts, the skin issues almost disappear.
I am currently in light box treatment for the Mycosis Fungoides to drive all the T cells and B cells out of my skin. Then I expect to start my 4th treatment for the CLL later this year. Hopefully we will not see my skin show an angry rash as it did when I was on Imbruvica/Ibrutinib
I was diagnosed with psoriasis 8 years late, only after I was diagnosed with psoriatic arthritis
I was dianosed with fibro before being diagnosed correctlynwith psoriatic arthritis due to psoriasis only on palms of hands not being recognized as such.