I have HCV, cryoglobulinemia, and a monoclonal gammopathy IgM 0.5 g/dl. My rheumatologist found it as my RF is 214. I was dx'd just about 4 months ago and still awaiting interferon/ribavirin tx. I have questions and my hematologist has been less than helpful. I have symptoms, but he doesn't seem to want to here about them, and when I explained to him of severe pain in my feet (red/hot/inflammed, not ambulatory) he stated knowing my level of RF "maybe it's gout". Then I explained to him that all symptoms of pain and inflammation disappeared on their own within 12 hours of onset. He looked at the floor and shuffled his feet and stated..."gout symptoms don't disappear". And then he stated "Don't you have a rheumatologist for this?" I said "Yes, she sent me to you and stated that you'd handle everything". To this he seemed to get angry, like he didn't want me as his patient but performed the necessary blood work anyway.
I have no intention on following up with this doctor, I received a blood transfusion in 1981 and have no history of illegal drug use or alcoholism (I don't drink at all, it killed my Dad). His treatment of me was unkind and I asked for a copy of my records.
Here's my information...
Cryoglobulin positive, Beta-2 Microglobulin, Serum, elevated, Immunoglobulin IgM 972, Rheumatoid Factor 214, Flow Cytometry from Pathologist as follows:
CD5+(dim), CD19+(bright),CD20+(bright),CD22+, FMC7+, CD11c+(dim),CD10-,CD23-,CD25-,CD103-,CD38+(bright)
The pathologist has coded this report with a diagnosis of 273.3 Macroglobulinemia (idiopathic)(primary)Waldenstrom's Macroglobulinemia.
I called my hematologist regarding this dx and asked him if I had Waldenstrom's, he said "No, if I thought that I would have done further testing". I said "But why did the pathologist code it this way?", he stated that's just the way they had to code it. My response "If it was MGUS then why didn't they use the 273.1 Paraproteinemia code?" He had no response to this. I asked if this could be causing some neurological symptoms, he said "Yes" and hung up on my before I had the chance to tell him what they were. I'm working with a neurologist to in trying to determine the nature of these things but without my hematologist's cooperation we may be at a loss here. My symptoms are as follows, most are intermittent:
Pins and Needles pain in hands and feet
Weakness in arms/legs
Speech difficulties - will be in the middle of the sentence and lose the context of the conversation entirely.
Upper lip going numb.
The really scary symptoms are as follows and also intermittent:
Pain across upper back, usually accompanied by soreness on left and right side in front just under rib cage, This is also accompanied by a generalized weak feeling with nausea (thought I was going to pass out). The last time this happened I had swelling under both of my arms, which dissipated after resting for several hours.
Most of my specialists (except for my hepatologist and neurologist) seem to treat me as though I had leprosy. I can understand how they feel I was a health care worker from 1978-1981 and I don't want to upset anyone, but how do I find good health care with HCV? I'm hoping to start interferon therapy soon but want to know if the WM will go into remission with the interferon of become exacerbated by it? Do I have Waldenstrom's or not? Please help.
Dear patient - I am not a doctor, but indeed a patient with WM myself. I cannot answer most of your questions, because I lack the medical knowledge. But what I do have is real sense of your experience of being uncared for and unheard by your doctors. Keep pushing. Change doctors if you need to. Keep asking questions. This is a rare disease if you do have it, and little is known about treatment and symptoms seem to vary from patient to patient.
You my my utmost empathy, please don't lose heart. If you read books, like Jean Bolen's Close to the Bone, you will see that the "difficult" patient in the medical parlance is someone like you, who advocates and wants answers and often a doctor will dodge and weave instead of saying he or she does not know. I experience this ALL the time and have Stage IV WM. I am doing oral chemotherapy now which is nasty, nasty, nasty. And my doctor treats me as if I am a joke much of the time; as if my symptoms are invented. Please keep asking, please keep searching. You will be in my daily intentions.
Dear patient - I am not a doctor, but indeed a patient with WM myself. I cannot answer most of your questions, because I lack the medical knowledge. But what I do have is real sense of your experience of being uncared for and unheard by your doctors. Keep pushing. Change doctors if you need to. Keep asking questions. This is a rare disease if you do have it, and little is known about treatment. Symptoms seem to vary from patient to patient.
You have my utmost empathy, please don't lose heart. If you read books, like Jean Bolen's Close to the Bone, you will see that the "difficult" patient in the medical parlance is someone like you, who advocates and wants answers and often a doctor will dodge and weave instead of saying he or she does not know. I experience this ALL the time and have Stage IV WM. I am doing oral chemotherapy now which is nasty, nasty, nasty. And my doctor treats me as if I am a joke much of the time; as if my symptoms are invented. Please keep asking, please keep searching. You will be in my daily intentions.
Thank you Madame B, I'm trying to find help at a local cancer center, but the wait is slow and I don't know if having HCV will keep me from being to obtain treatment or not. Considering the monoclonal gammopathy is growing, it was 0.4% in April and 1% in June , I am getting more concerned about it. I will be starting interferon treatments next week. I guess I am a difficult patient because I'm the one who keeps asking my doctors about my condition, because I've found that taking their word without expressing my own concerns can be life threatening.
I had an instance where I was treated for a broken rib at a local ER, I have asthma. And when seen by a PA, she gave me one xray and pain meds. Even though my breathing was rapid, shallow, and I was shaking all over, she did not provide a prednisone prescription nor any breathing treatments. I was released, in shock. Within 24 hours my left lung began filling with clear fluid faster than I could cough it up. I was coughing up large amounts every three breaths, and couldn't lay down to sleep for fear I would drown. The next day I saw my pulmonary doctor and she stated that the treatment I had received in the ER, was cruel to the point of negligence and gave me the appropriate treatments to which I responded well.
So, if you enjoy life, question everything, if the answer does not seem "full of common sense" then stop and ask again.
Hang in there Madame B! Life is truly wonderful, no matter what our condition.
Stay the course; keep asking. Keep searching. Good luck with your local cancer center. I am going to start treatment for stem cell harvesting and possible autologous transplant/and or treatment with Fludarabene myself. My M spike and IgM have both come down after two courses of high-dose oral chemotherapy since July 3 with Cytoxin.
But my road has been a two-year walk with many life changes. Spouse could not cope and left, so I really have had help from caring, loving friends and some family to see me through. Mostly though, it is my own research, independent spirit, and like you asking questions constantly and demanding quality care that has seen me through.
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