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- Wed Aug 17, 2005 8:28 am
**I tried to keep this short but its over 3 yrs of treatment.
I am 34, female, 6' and weigh 300lbs, I smoke (13 yrs), do not drink, no drugs or sex (other than my weight no risky behavoir). I have had abnormal CBC's for the last 3 yrs that I know of. I say that because I have always had chronic URI's and bronchitis so I have assumed they never caught them before. About 2yrs before it drew attention I had some joint pain in my shoulder and later my ankle. I went to the dr several times for a lump in my ankle and after about 7 months I had surgery to remove a mass which turned out to be a benign tumor of unknown origin.
I had several bad infections and then around 11/3 I had pain in my knees that got worse and worse with swelling. It was when the Orthopedic dr ran a CBC to confirm I had RA (I do not have marker) that he refused to treat me because of CBC, he believed I had multiple myeloma. This started my last few years of hell.
CBC results 11/2
WBC 33, RBC 7.6, HGB 17, HCT 53.5, MCV 81.3, MCH 28.0, RDW 18.5, MCHC 37, RDW 17.5, Platelet 245, MPV 12.8, Neutrophils 69.2, lymphocytes 23.5, Eosinophils 68.3, Basophils 1.4, RBC Morph Normal, SED rate 2
WBC 16.3, RBC 6.31, HGB 17, HCT 51.6, MCV 81.8, MCH 27, MCHC 33, RDW 15.5, Platelet 235, MPV 11.5, lymphocytes 21.9 (everything else was in normal range)
Over the next few months my pain worsened and I became increasingly fatigued. My PCP continued to treat me, running tests and sending me to experts and ruling out fibromyalgia, lupis and lukemia. I went from vicodin to percodan for the pain 4 times a day and by 4/3 I was unable to work. I went to the Mayo clinic and was not successful in getting any diagnosis.
I was treated in Vegas by a Hematologist for 6 months and he did a bone marrow aspiration and biopsy as well as a lymph node biopsy because MRI and CAT scans showed I had enlarged nodes and cysts throughout my chest stomach and pelvis areas. By this time the dr's were treating my orthopedic problem and blood problem separately and unrelated. My biopsies were consulted on by a dr in Bethesda at the naval hospital, one at the CDC, and one at the ACRC as well as one from a CD foundation. All said the biopsies were "non conclusive" and my hematologist told me that I had lymphoma somewhere and it would just take time to show up. The hematologist treated me until my insurance ran out in 1/04.
I had stopped taking all medication 8/3 because I could not afford them (I had been on glucophage, xanax, trazadone, lasix, prozac, and percodan). I took vitamins and watched my diet and literally forced myself to be active and ignore any discomfort.
Gradually I was able to cope with the pain and was not getting as sick as I felt I normally did in the past but without insurance I did not see any dr until 4/5 at which time I had all my records sent to him and he ordered a CBC which came back as before, and he reordered the cbc insisting it had to be in error (as the PCP before).
WBC 18, RBC 6.7, HCT 52.1....all very similar to the first. I was very upset and even a little shocked because I honestly thought I was doing better.
He sent me to another Hematologist whose partner was the first one I saw back in 2002 who dismissed me as being "too large" to examine. I went to his partner only because I was assured they were the best in town. He examined me, ran a CBC and informed me its all because I'm fat. I am 6' and weigh 300lbs. I know this is not healthy but I do not have any heart, liver or kidney problems at all and have been told repeatedly how surprisingly good everything is in light of my CBC's. When I went in I told this dr I had just finished Zpac for a sinus infection and was on my third day of Clarithamyacin because it had worsened (I am now on my 8th day of my 3rd course of antibiotics for the infection).
WBC 22, WBC 6.7, HCT 58.2, MCV 84.2, MCH 29, MCHC 34, MPV 12.9, platelets 320, Neutrophils 71.0, Lymphocytes 21.7, RBC morph normal. SED 1
I began having pain in my ankle again and told my dr who said it was a slight sprain. That was in 4/5. The lump is now about the size of a golf ball and I went to an ortho dr who, after seeing my records and knowing about the previous tumor and how it did not show up on X-rays as anything more than a mass, told me I have arthritis and its only a bone spur (they did not touch my ankle and only looked at it from about 2 feet away). I mentioned this to the Hematologist and he said as the one before him that my joint pain and problems have nothing to do with my blood tests and my fatigue and other symptoms. This lump causes my ankle to be very sore and (not constantly but about once a week or so) I can hardly walk on it it hurts so bad. It is also obvious enough that my coworkers have asked about it and it is not a soft lump it is hard like the one I had removed before. The one I had removed the dr said he had never seen anything like it, he had thought it was bone but it was a tumor.
I have been as forthcoming and honest as I can be about everything that has happened over the last few years.
I do not expect a diagnosis or even a guess. I just wanted to put out everything that has happened in hopes that maybe someone could advise me of what to do if the dr's are basically refusing to treat me. These are not imagined ailments, even though I feel as if they are at times. Dr's get very excited and optimistic at first and quickly get stumped and brush me aside. I have finally found another job that I like very much and I don't want anything to jeopardize it but over the last 6 months many of my original symptoms have started to return. Please, where do I go from here?
- Thu Aug 18, 2005 10:01 pm
Have you been tested for Polycythemia Rubra Vera? Although you smoke, your WBC, HGB and HCT are still higher than would be expected due to just smoking, IMO. Was anything even mentioned about this in your bone marrow biopsy?
- Mon Aug 22, 2005 10:05 pm
No. Every test I have had has been (according to my dr) inconclusive. He said that is strange because usually they can completely rule out lymphoma, but in my case the biopsies are negative but symptomatic so they ruled out myeloma and castlemans disease but came right back to lymphoma. I've never heard of Polycythemia Rubra Vera and I just googled it. I have never had bleeding problems before and I don't think my spleen is enlarged, I know my liver is slightly but my spleen wasnt mentioned. This current Hematologist seems positive all my problems are because of my weight, even though I have itching spells, pain in my bones, trouble swallowing, extreme tiredness, and chronic infections. I just finished the 3rd course of anitbiotics for my sinus infection and I still don't feel to good. I will ask him about this though. thanks.