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Old Thu Feb 12, 2015, 06:43 AM
PamelaSP PamelaSP is offline
Join Date: Feb 2015
Location: England
Posts: 2
Tcell LGL leukemia

I was diagnosed with Tcell LGL February 2014, after years of misdiagnosis, ME, Sjogrens, Fibromyalgia, Muscular dystrophy - the list is endless depending on what speciality the consultant specialised in I was visiting.Initially a watch & wait prognosis was decided upon, and my Rheumatoid Arthritis specialist was hoping to start me on methotrexate, which would be the initial treatment for Tcell LGL.

Unfortunately my WBC has been too low (2.5 or less) and my RA doctor is not willing to take the risk of lowering it further. However things have taken a turn for the worse, my spleen is enlarged and very painful, on the latest CT my abdominal and neck lymph nodes are swollen, I feel light- headed 24/7- have passed out twice, once knocking myself out for 7 hrs, and I now have a constant headache over my right temple. Last summer I had severe leg pain and was placed on high dose morphine for 3 months- I came cold turkey off it in November, as I had lost so much weight and was sleeping 23 hrs a day. My legs are now working and the neuropathy has cleared up. My night sweats are out of control and my body temperature averages 35 centigrade.I spend all my days sat in front of the fire as I am so cold.

My question to this group is have any of you experienced these symptoms - especially the passing out and low body temperature?

My haematologist has said that I can have my spleen removed, and start chemo when the bone marrow results come back in 4 weeks.

I think that my T cell LGL has transformed, has anyone else had this happen?
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