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?
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Hi Ginger,
I spoke before about my daughter and her MGUS diagnosis. Her numbers fluctuate each week. I don't want to talk about that this time. My question is about healthy eating. Does anyone have a diet that has been helping to improve their kidneys function. I believe in foods and good healthy natural solutions are the best answers to our heath! Any replies are welcomed. What has worked for you. Thank you and God bless you all.
@psue4 Oh, diet and kidney function! A topic those of us who deal with chronic kidney disease hold dear to our hearts [and kidneys!]. If you wander over to the kidney and bladder support group page, you will find several discussions that go in to different diet ideas and how members have found what is working for them. https://connect.mayoclinic.org/group/kidney-conditions/
As both a multiple myeloma patient, and end stage renal disease patient [I am on dialysis], not related to the myeloma, what I eat plays an important and challenging part of my life. Low sodium, quality protein, low phosphorus/calcium foods are critical. Teaming up with a renal dietician can be useful. Fresh foods over processed whenever possible. Fluid restrictions if indicated; I aim for 2 liters of fluids per day, a challenge when I am dyhydrated. Each kidney patient is different, based on co-morbidities, but we are the same, if you can understand that?
Ginger
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. ❤️
My diagnosis of MGUS was confirmed by labs 3 years ago. It was discovered by a rheumatologist working me up for autoimmune conditions. I was referred to hematology/oncology and underwent bone marrow biopsy to determine if there was any evidence of MM, which, (thankfully!), there was not. I'm closely followed with labs every 6 months (M protein positive), and hematologist office visits.
My 6 active grandkiddos keep me on my toes! I have 3 amazing, supportive daughters, and gardening, biking, skiing, camping, and gourmet cooking, keep me grounded in my passions!
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
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
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!!!!
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?
@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