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← Return to Hypogammaglobulinemia
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Thank you for the information. I will find me one. The oncologist told me that I did not look like someone who had multiple melanoma & he did not think I did but he needed to check some things to rule it out. I had some blood work but I’m not sure what it means where cancer is concerned. Today I tried to get answers from them cause the doc left me a very vague message & it made no sense. It seems he’s fixated on 1 symptom I’ve had for years where my cheeks & ears get red. I tried to explain to him my blood pressure is not affected when it happens but somehow he came up w/the idea that it shot right up & then I turned white as a sheet. I swear these docs make up their own crap. I never once said that nor gave any impression of it. So he just decided that was an issue I had. Dear lord!! Not the first time a doc TOLD me a symptom I had that was so far from the truth. Makes me mad! Since Thursday I’ve been trying to get the nurse to call me back & answer my damn question but no luck there. Tried today as well & of course nothing. I’m about ready to go to U of M in Ann Arbor Mi. It’s only 2hrs from me.
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I had to share because of your doctor saying, "that I did not look like someone who had multiple myeloma (MM)". My rheumatologist said something similar to me when I developed non Hodgkin's lymphoma (NHL) after living with Sjögren's syndrome (SS)and Autoimmune Hepatitis (AI) for eleven years. His response was that in all the years he'd practiced, non of his patients with SS developed NHL. Research says 5-10% of those with SS develop NHL...not only that, but my Dad had SS and also developed NHL I left his practice because despite the every three month blood work, nothing was mentioned once it went WAY out of wack in a variety of areas...NHL. I was alerted to a bump on my cheek and eventually a PET scan showed NHL, stage 2. Standard of practice at the time was chemo followed by maintenance Rituxan. My Rituxan treatments went on for 7 years. (Approximately 7% of those who get maintenance Rituxan develop hypogammaglobulaemia. Chronic chest, sinus, ear, and throat infections, plus pneumonia led me to seek out an immunologist. He did something called the antibody challenge...gave me a pneumonia vaccine to see if I developed antibodies...I didn't. Vaccines do not work for me. That is what you learn when you have hypogammaglobuliaemia. I don't go out much, but when I do, I wear a mask...it helps. Plus, I get IVIG infusions every three weeks...they have literally saved my life.
At about the same time I was going off Rituxan, all of my antibody levels were abnormal. The one we have been watching for ten years is the M Spike...this is the number one marker for Multiple Myeloma (MM). It has been as high as 2.7...3.0 is MM. My immune system is definitely challenged, and I keep having to up my game. I'm just recovering from pneumonia and RSV. Over the last couple of years I have noticed that I need to monitor my oxygen levels and temperature. There are reasons older people die from pneumonia...you are not aware of the changes in your oxygen or temperature, unless you test. I no longer see a rheumatologist, even though I have developed other autoimmune diseases. My main doctor is my oncologist...he is also a hematologist...I see him every three months. I trust my oncologist...and that's what we all need, someone we can trust. Unfortunately, while I was a smart student, science escaped my curiosity...and the learning curve has been quite the journey. Good luck to all of you with this immune disorder....I wouldn't wish it on my worst enemy.
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Hello @autumn12575,
I'm sorry to hear that you are still frustrated and not understanding some of the medical terms that are being mentioned. I see that you are thinking of going to the University of Michigan in Ann Arbor. I go there also and find them very responsive to their patients and they do an excellent job in educating their patients. I hope you are able to get an appointment and get some good information.