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← Return to Hypogammaglobulinemia
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Karen, I have no experience with this condition or its association, if any, with osteoporosis. But I found this article in the Cleveland Clinic Journal of Medicine that has a lot of information. You can read it online or download the PDF.
One of the best things about such articles, and research studies is that you can also look up the author(s) and start to build a data base of people working in that area. That can be particularly helpful if one is trying to learn more about, or get treatment for, something uncommon. People tend to specialize in areas that interest them a lot and loke to talk about them. I've called specialists whose names I found this way and, in one instance, got referred to an excellent physician in my area. Hope this is some new info.
From the CCJM;
"Evaluating and managing hypogammaglobulinemia"
Replies to "Karen, I have no experience with this condition or its association, if any, with osteoporosis. But..."
What a great article! I too have been diagnosed with hypogammaglobulinemia along with mt dilated bile and pancreatic ducts. Tomorrow I have an appointment with a rheumatologist who I hope will know what she is doing and/or how to treat me. My PCP is also consulting with a hematologist regarding some of my recent lab work. I am still seeing the hepatologist in March, and look forward to getting some straight answers to this awful condition I have lived with now what will be 3 years in April 2023.
I did receive some good news that my CT Scan this past Friday showed no changes in my ducts since the MCRP I had last summer. I realize that I "should" feel very happy about this news, yet as I was working on my art project this evening I could not help but to think how much I have changed over the past 3 years, how I look, how I feel most of the time and things of that nature. Today I went shopping to find some new sweat pants and wound up in the boys department where I did find a pair, and while they are a bit "roomie" I can wear them over leggings to stay warm. I am also getting a lot of support from my pharmacist who is always encouraging me to eat, although having no appetite most of the time makes it difficult to eat. However, I did stop in at Trader Joes and purchased everything I needed to make some chicken vegetable soup to go with some bread I have been making myself. While I did lose about 5 pounds over the past two weeks, I am determined to get that weight back.
I find I am more tired than usual, and understand that this too is a part of my disease. I tend to push myself to the limit at times in an effort to believe and feel I am more "normal" than one who has a chronic illness.
While I still greet each day with gratitude, admittedly I am feeling a bit dismal about my current situation. I am sure many feel this way and I applaud everyone who keeps putting one foot in front of the other as we all navigate what can be a skewed medical system.
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Thank You Callalloo for the advice and the link to the article. Much appreciated, karen