My daughter found out yesterday that she has MGUS and now has to do a 24 hr urine and skeletal xray. She also has Crohn's Disease and is having a major flare (Want to put her on Methotraxate..ugh) and also a pre cursor to Cutaneous T Cell Lymphoma. Because of this she can't take immunosuppresents because they cause Lymphoma and would then give her the CTCL. She also has osteoporosis because of taking so much prednisone as a kid and young adult so she can't take that now either.
My question is now as my heart is racing because right now all we know is that there was a spike and showed the MGUS could she have Multiple Myeloma and that's what the other tests are for now is to see how advanced? Or is this something she could live with. She's only 30 years old and never had a chance to marry and she's all I have.
She looks terrible and frail since she lost about 15 pounds the last two months but we thought that is because of the Crohn's and she can't eat much. Night sweats, and weird symptoms going on along with tingling in her thumb...could this be caused by the MGUS? Rash on her hand and hematologist said to see a dermatologist. Can MGUS cause rash? Also adrenal insufficiency?? She's been sick for years and am wondering if she's had this for awhile and never picked up. A doctor told her to see a hematologist oncologist because her white blood count and neutrophils were low. She went back on her supplements and they are now raised. Not high good like they were years ago but better. Could the supplements cause them to go up?
I'm sorry this is so long because I'm a mess and recently lost my husband to cancer which was a nightmare.
Thanks in advance for any input.
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Re: New To All This
Hi Itsme - About a year ago I had my first m spike (1.5) and my endochronologist who I see for low thyroid referred me to an oncologist-hemo. Because of the spike, she ordered the 24 hr urine, a panel of blood tests, 40 plus X-rays, and finally a bone marrow aspiration. The tests came back normal except for the diagnosis of Ig MGUS with trisomic 7. Last week I visited the endo doctor for annual assessment and she said it is more common for those with autoimmune diseases to have MGUS. This is why she runs involved blood panels. I learned she has other patients with low thyroid and MGUS. She explained MGUS should be symptomless and those with symptoms are usually assoc with their autoimmune disease.
My friend and her son both have Crohn's and seem to have a great deal of symptoms especially when they experience stress. My friend also has early bone loss and is very thin due to issues with pain experienced from eating a trigger food (many times unknown). Good they are running the tests for your daughter. Again, MGUS should not produce symptoms and is monitored every 6 months. My hemo-oncologist said to continue living as usual and to stay active. Take care, Diane
My friend and her son both have Crohn's and seem to have a great deal of symptoms especially when they experience stress. My friend also has early bone loss and is very thin due to issues with pain experienced from eating a trigger food (many times unknown). Good they are running the tests for your daughter. Again, MGUS should not produce symptoms and is monitored every 6 months. My hemo-oncologist said to continue living as usual and to stay active. Take care, Diane
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Dianem
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