Chronic Lymphocytic Leukemia (CLL) Support Group
Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed form of leukemia in adults. Men are twice as likely to develop CLL as women, however the key risk factor is age: over 75% of new cases are diagnosed in patients over age 50.
Hi all, (I know this is long but PLEASE READ!!!)
I recently received news from my dr. that my WBC count is 13,000 and I was told he was taking a "wait and watch" approach where he would be monitoring my results for awhile. Well I have had several of these tests in the last few years and ALWAYS my WBC count is high. At first I just ignored it thinking that I had some sorta infection as I always have some sorta infection. Right now I have a UTI that has not gotten better despite a week on antibiotics, 2 inner hordeleums in my eyelid (styes) that have not gotten better despite 10 days of antibiotic therapy and tons of warm compresses (have had this for about 2 months) plus I now have some sort of gigantic angry red sore on my back that really hurts and I am getting some kind of sore inside my upper ear above the lobe. It feels like it is about to break the skin soon. I do know that frequent infections are a part of leukemia.
The reason I am thinking about CLL is because all of this has been going on gradually. I have been having symptoms for about 2-3 years now. In 2006 I had severe Epstein Barr Virus and was sick with it for about a year. That led to Chronic Cytomegalovirus. Now I have Reynauds and Sjogrens due to the severe EBV. I also have something called Mixed Connective Tissue Disorder. The doctors told me I would get immune disorders because of the EBV. I constantly have swollen lymph nodes and there are lumps under my skin in all areas. I get pink eye all the time. I also get mouth sores a lot. I am easily tired, really can not do much physical activity as it makes me so tired I have to sleep for hours after. I start sweating all time for no apparent reason. I will just break out into this completely embarrassing sweat where within minutes I am actually dripping sweat like water. I have no energy and so I drink 5 Hour Energy all the time. I take proper supplements and vitamins and they help but minimally. I have not lost any weight but then I really cant as I take several meds that wont allow weight loss. However I am never hungry and I just eat when I am supposed to like dinner or whatever. When it is just me for lunch or any other time I simply wont eat. I do drink a lot. I constantly feel thirsty. Oh yeah I do have those little red spots all over my body. People actually ask me what they are. My long bones and joints ache to the point of becoming hard to walk or use my arms, feet, or hands. I get lots of strange headaches.
My dr. says he thinks my high WBC is allergy based but my allergies really are not that bad. He is sending me to a Hematologist, a blood disorder specialist because of my "history". I am wondering if they think I am just being hypochondriac or if they think there is possibly a blood disorder to consider. Even without infection I always have WBC in my urine along with small amounts of protein. I have high blood pressure that even with 3 blood pressure meds will sometimes get really high with no apparent reason. I have had tons of tests for my heart, cholesterol, etc. and they are fine. My liver hurst a lot but then I have fatty liver and cysts due to a prescription med I have taken for years damaging the liver. I can not sit to either one of my sides as they both feel very uncomfortable. My left side where my spleen is as well as my right side. My feet are completely messed up due to a bad fall in Feb. I had two fractures on my left foot and a severe strain in both feet. They should be well by now but they hurt almost the same. Also I just barely scratched my arm in Jan. one of those scratches that does not even cause bleeding just some torn upper skin. I now have a scar there. It literally took months to heal. My mom is scared about leukemia, she is actually the one who brought it up.
If this sounds similar to any of you or if it sounds like something else even please write back and let me know. I prefer knowledge over living in the dark. I am someone who talks something to death and then tends to put it away hardly taking in back out to look at again. Bless you all and know you are in my positive thoughts. Irish.
P.S.---I also have really bad vision problems, my eyesight is getting so bad my dr. has made several comments about it happening so fast. Sometimes I have to close my left eye as it is the worst and also it seems like I am seeing cross eyed or double vision because closing that eye helps my eyes stay focused. My foot dr. thinks that I have some sort of "systemic disorder" because my feet are baffling him. Thanks again!!!
I recently received news from my dr. that my WBC count is 13,000 and I was told he was taking a "wait and watch" approach where he would be monitoring my results for awhile. Well I have had several of these tests in the last few years and ALWAYS my WBC count is high. At first I just ignored it thinking that I had some sorta infection as I always have some sorta infection. Right now I have a UTI that has not gotten better despite a week on antibiotics, 2 inner hordeleums in my eyelid (styes) that have not gotten better despite 10 days of antibiotic therapy and tons of warm compresses (have had this for about 2 months) plus I now have some sort of gigantic angry red sore on my back that really hurts and I am getting some kind of sore inside my upper ear above the lobe. It feels like it is about to break the skin soon. I do know that frequent infections are a part of leukemia.
The reason I am thinking about CLL is because all of this has been going on gradually. I have been having symptoms for about 2-3 years now. In 2006 I had severe Epstein Barr Virus and was sick with it for about a year. That led to Chronic Cytomegalovirus. Now I have Reynauds and Sjogrens due to the severe EBV. I also have something called Mixed Connective Tissue Disorder. The doctors told me I would get immune disorders because of the EBV. I constantly have swollen lymph nodes and there are lumps under my skin in all areas. I get pink eye all the time. I also get mouth sores a lot. I am easily tired, really can not do much physical activity as it makes me so tired I have to sleep for hours after. I start sweating all time for no apparent reason. I will just break out into this completely embarrassing sweat where within minutes I am actually dripping sweat like water. I have no energy and so I drink 5 Hour Energy all the time. I take proper supplements and vitamins and they help but minimally. I have not lost any weight but then I really cant as I take several meds that wont allow weight loss. However I am never hungry and I just eat when I am supposed to like dinner or whatever. When it is just me for lunch or any other time I simply wont eat. I do drink a lot. I constantly feel thirsty. Oh yeah I do have those little red spots all over my body. People actually ask me what they are. My long bones and joints ache to the point of becoming hard to walk or use my arms, feet, or hands. I get lots of strange headaches.
My dr. says he thinks my high WBC is allergy based but my allergies really are not that bad. He is sending me to a Hematologist, a blood disorder specialist because of my "history". I am wondering if they think I am just being hypochondriac or if they think there is possibly a blood disorder to consider. Even without infection I always have WBC in my urine along with small amounts of protein. I have high blood pressure that even with 3 blood pressure meds will sometimes get really high with no apparent reason. I have had tons of tests for my heart, cholesterol, etc. and they are fine. My liver hurst a lot but then I have fatty liver and cysts due to a prescription med I have taken for years damaging the liver. I can not sit to either one of my sides as they both feel very uncomfortable. My left side where my spleen is as well as my right side. My feet are completely messed up due to a bad fall in Feb. I had two fractures on my left foot and a severe strain in both feet. They should be well by now but they hurt almost the same. Also I just barely scratched my arm in Jan. one of those scratches that does not even cause bleeding just some torn upper skin. I now have a scar there. It literally took months to heal. My mom is scared about leukemia, she is actually the one who brought it up.
If this sounds similar to any of you or if it sounds like something else even please write back and let me know. I prefer knowledge over living in the dark. I am someone who talks something to death and then tends to put it away hardly taking in back out to look at again. Bless you all and know you are in my positive thoughts. Irish.
P.S.---I also have really bad vision problems, my eyesight is getting so bad my dr. has made several comments about it happening so fast. Sometimes I have to close my left eye as it is the worst and also it seems like I am seeing cross eyed or double vision because closing that eye helps my eyes stay focused. My foot dr. thinks that I have some sort of "systemic disorder" because my feet are baffling him. Thanks again!!!
deleted_user
How frustrating for. My heart goes out to you! I have no idea if you have CllL... Some of your symtoms sure sound like it; however, I'm so new to this I really don't know. I do know that my regular Dr. Was able to give me a possible diagnosis by just looking at the results of my blood tests. Then, the oncologist made the definite diagnosis by also looking at the tests. Again, I Don't know exactly what they were looking at, but whatever it was, it was there. I also have Meniere's Disease. I have had this for years; however, !t took the medical world months to finally diagnose this. I felt so sick, and I ws beginning to think that the Dr.'s thought it was all in my head. I certainly can feel your fear and your frustration. Hang in there. Do talk to an oncologist. Keep pushing your Dr.for a diagnosis. If you don't get any results, you might think about finding another Dr.
deleted_user
I don't think you have a leukemia. The test is very definative and your WBC of 13,000 is not that high. Just barely above the normal range. That is more indicative of an infection process or an auto immune. A lot of your symptoms do sound auto immune. Ask for an ANA test. This will determine the presence of auto immune disorders. Unfortunately, that does not narrow it down that much since there are literally hundreds of AI diseases out there. And they like to travel in packs. You may have more than one. If your Dr. has not had your blood looked at by a pathologist, ask him to do so. In CLL as well as the other leukemias, the lymphocytes and blasts have distinctive deformities. You might try a rhuematologist. Good luck to you.
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