I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Right now, I don't know. I went to a hematologist after still having anemia 5 months after surgery.
He included some tests that are new to me. One of them is the kappa free light chain (serum). I was surprised to get an abnormal result 22.66. So now, after spending the day on Google, I think it's possible that I have MGUS.
How were you diagnosed?
Thank you, Ginger. You are amazing. I am slowing learning the dermology and what it means. I don't think my daughter is staying up on it because she wants me too. I know she will be asking these questions next week when she sees the doctor. Some of her numbers are flagged high and some flagged low. Do you know what Beta 2 microglobulin means?
Thank you again. You are gelping alot of people with your responses. We hope we are helping you too. ❤️
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@psue4 Knowledge is power. and can make things less formidable. This I firmly believe! As with so many health conditions, we as humans and members here are all unique in our own right. Having this opportunity to share with each other, and see how different things can be approached, is invaluable.
Beta2 microglobulin has to do with kidney filtration. It is but one value in a series of labwork, and is not really taken as a single value, but cobbled together to give an indication of renal function. As you will often "see" me say, look at trends, not a single lab report. It is not uncommon for people who have MGUS to also have some kidney impairment. There is a protein called Bence Jones that is tested for, to determine if a kidney issue could be related to MGUS and all.
Thank you for your kind words!
What can be done if you have kidney issues associated with MGUS?
I hope the Pregabolin works as well for you as it has for me. I tried gabapentin first, with increases in the amount with no response at all, then we went through 3 more medications with various reasons I could not take them, Then we started the Pregabolin 3 times a day for a month and then increased the amount but only 2 times a day. I did get very sleepy and it finally requred me to reduce the amount lower and only twice a day. So far, good news pain is ALMOST completely gone. When the pain begins I put some Ambesol (teething med for badies) on my gums and all is well.
@bluphi Welcome to Mayo Clinic Connect. Has it been determined you have Bence Jones proteins present in your urine?
If you visit the Kidney and Bladder Support Group, you will find several discussions to help you understand what to do with kidney issues. Diet is a major factor, reducing sodium/phophourus/ calcium/potassium laden foods. Moderate exercise. Acetominophen, no more ibuprofen or Alleve=type products. As far as medications, speak to your hematologist oncologist about what to do. For me, my myeloma medications have had lowered doses to keep my kidneys from being too overwhelmed. I actually am on dialysis, and my kidney issue is the result of a ultra-rare autoimmune kidney disease.
What else may I help you with?
I was dx with MGUS in 11/22 It was discovered wheh recovering from extensive back surgery. Also dx with chronic kidney disease 3 which is also new. Recently found positive for auto immune disease.Am trying to find out about both. My question has anyone else been losing their hair . This started shortly after the MGUS dx. Are there any meds recommended for this? Thanks
Hi There. My name is Tracey. I was diagnosed at 50,with MGUS. The proper blood tests that Oncologist need was never done When a Dr Assistant was in I had time to explain to him and get the Sep? Test done. 7 Flagged pages. I was over on almost or let’s say lots. I asked for the report. Saw it. I went to Cancer Care as I was scared. My dr said I was fine. Then the pain in my side back. Neely button hernia,kidney stones and Uteter stones. Had for over a year. Nothing done. No surgery to fix hernia. They said kidney stones were big over a mm? Hard to pass. My dr will not call me help me. I am on pain meds but I still have it. He won’t increase. Nothing. I cannot your comment about Kidney stones. Wow. I will try to keep u posted. Really sick. Sorry for not replying etc. you are in my thoughts. God Bless❣️🇨🇦
That’s a lot to deal with. I’m so sorry. Are you able to get some recommendations for a physician who will better meet your needs? It’s so frustrating to have so many questions and need better outcomes.
Is there a social worker attached to the facility in which you receive your care? They can often assist in helping you to be actually heard.
Keep insisting on getting the treatment you need. The squeaky wheel does get the attention.
@roseyd It sounds like you have several health concerns right now. I don't know that the MGUS may be the only reason you are losing hair. Perhaps it is a combination of things? We lose hair everyday normally. and sometimes in stressful situations we lose more than normal amounts. Or we notice it more. Do you think that could be the case here?
Thanks for your response Ginger. I saw my dermatologist this morning who ordered the labs on me that found the autoimmune disease. She said it is borderline?? She ordered a Rx for hair loss to use. My frustration is having so many dx going on-I am seeing my primary on Wed and hopefully she can figure out all this for me as I have not seen her since my surgery.
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