| Re: Secondary Complications
I have a strange mass of what I have been told is bone marrow tissue outside of my bones and in my body cavity sort of between my spine and lungs. I was also told that has shrunk since I started regular transfusion therapy. I have read this is common with Thal Intermedia. I also had a mass of something near my stomach found on an MRI. They did an endoscopy because they thought it was stomach cancer. It turns out is was not inside my stomach, but outside. My hematologist decided it was a mass of swollen lymph nodes and it was because of the Thal. He didn't feel it was anything to worry about. I feel I should be worried about a doctor that isn't worried about a mass of swollen lymph nodes.
I had a recent chest xray to rule out pneumonia when I wasn't feeling well last week and they didn't say anything about the lymph node mass. Maybe it shrunk or went back to normal. Of course they FREAKED out about the bone marrow mass and kept me in the ER for NINE hours.
THANKFULLY I have an appointment today with a group of Thalassemia specialists I found in my area. I am SO TIRED of doctors scaring me about things that are fine and not treating things that need attention.
As far as pain, I have advanced osteoarthritis in my left hip. It is actually bone on bone, so obviously that hurts. in the past I have had pain in my feet and hands. When I was younger I had a lot of knee pain, but that got better. My back gets more tired feeling than actually painful. Laying down flat on my back for a few minutes helps. I have notice dull headaches that never seem to go away when my Hb is way too low. My elbows and shoulders act up sometimes too, but it is usually just a day or two before it goes away.
My daughter has Thal Minor. She has complained about being lightheaded in the past. I asked her about it the other day and she said she still feel this way often but she is used to it and it doesn't bother her anymore. No pain as far as I know. She did have a fainting spell once after getting up too fast, but I think part of that is that she doesn't eat properly (she's a vegetarian) and she doesn't keep hydrated enough. I have stressed to her that hydration (and a balanced diet) is very important, but she is a stubborn 15 year old. What to do? :)
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