Does anyone else have MGUS?
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.
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
@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.
https://connect.mayoclinic.org/group/kidney-conditions/
What else may I help you with?
Ginger
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.
What can be done if you have kidney issues associated with MGUS?
@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!
Ginger
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?
I have note. I will ask my neurologist. He just added another 100 mg to my gabapentin. I am really thinking about surgery. I work in Occupational Therapy and I recently had an elderly patient with TN and she was incredibly compromised. I do not want to do the microvascular decompression (which is what I was told I need)...I want to try one of the other less invasive methods. Thanks for the advice. All the best to you!!!!
Oh my goodness - heat intolerance - that one has been a biggie for me too! I have had that! I was told it was menopause but that happened long ago.... then it was blamed on a med that they gave me for the "fibromyalgia" pain and stiffness (duloxetine)... So they added hydroxyzine to reduce the sweating which also does help with the anxiety that is now through the roof...but I am concerned about too many meds. I take gabapentin as it is for an unrelated condition (trigeminal neuralgia). Like you, I started having some tingling and numbness, and even weakness in my left upper extremity last fall. Hematologist said he didn't think related to MGUS, sent me to my neurologist---did an EMG, which showed nothing --- neurologist said must be from something also. Since then I am feeling tingling in both hands every morning. My biggest symptoms are fatigue and all over body pain . But I get up and go to work everyday. I have a physical job - Occupational Therapy. I am wiped out by the time I get home. I have to be careful about how much I complain or vent when I get home bc my family doesn't understand how much I am pushing through my day. I am barely getting through. As for benzene exposure which my doc also inquired about - no idea! I was raised in a suburban NJ town....lots of industry around us....a dump not too far away....I was born in the 67 and was running around that town in the 70s and 80s. Who knows what I got exposed to? People scoff at too many laws today - but back then you could throw anything away. Now you can't. And here we are. We are an example of why. Just one example. Anyway....so many things to discuss, right? All the best to you on this journey. xo
Have you tried Pregablin? I have Trigeminal Neuroalga, and the pain in my mouth and face was severe. Pregablin was the only med I could take, and still am taking.
Gina5009
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