Does anyone else have MGUS?

Posted by mjlandin @mjlandin, Jun 4, 2022

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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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

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@bluphi

What can be done if you have kidney issues associated with MGUS?

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@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

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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.

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@gingerw

@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

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What can be done if you have kidney issues associated with MGUS?

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@psue4

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!
Ginger

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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?

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@gina5009

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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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!!!!

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@migunner

Wow, you just told my last 9 years, started out heat intolerance, dehyd, ESS diag after 9 months of trying to get them to understand it wasn't in my head, sudden weight loss after few years struggling with digestion and gulping milk of magnesia, killed off digestive and restarted it with FODMAP diet, after 1st C19 moderna Vacc arthritis in left hand was first thing to start having real issues, nerve pains like twisting pinching in random locations lasting from few sec to several mins at a time, booster 1, did not do booster 2, am almost blind from light sensitivity to blue and white, reds yellows don't nearly as much, driving at night is real tense with migraine following, bright sun and day sky without shades triggers same, almost deaf in right ear from tinnitus, the list goes on, been on 2400 mg of neurontin for prophylactic for migraines, tried discontinuing on slow taper 3 years ago and that's when 1st experienced the twist pinch pain that did not respond to mechanical message, but if I lightly brushed a fingernail across the area of pain, even a few minutes between spells of pain, it was like I brushed it with a fire, burning pain flash triggered by light brush of an area the size of this . it's is bizarre, but now it pokes through the neurontin, now after my 2nd shingles booster triggered a full day of bone pains in both forearms, told doc to please test me for inflammation markers, came back pos developing light kappa, now raised level has doubled in last 2 months, low D Calcium ok, have to do imaging forearms and shin bones, but told doc to do more in depth testing genetically and all, she's on vaca til 23rd so I wait, retired mechanic benzene and chlorinated hydrocarbon exposure for over 25 years, before that I started at 13 instead of high school 5 years industrial refinishing, sandblasting and painting, we used to wash face and arms with laquer thinner, but heavy metals is fine, and am just starting on this, january was 1st test I had, Deacon Mitch.g

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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

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@lynne756

My MGUS was also found by going to a rheumatologist after a year of suffering with joint and bone pain - he found the m spike. Told me it was "probably nothing" and sent me off to see my hematologist/oncologist of many years ago since I had thyroid cancer in 2007....and the dx was MGUS. Although my hematologist doesn't think my bone/joint pain is from MGUS...but says, maybe? I have had extensive testing that I really don't understand. I had the full body xray which did show any lesions but the doctor said it showed lots of degenerative changes and if he was looking at the xray and had to guess my age, he would guess much older than my age of 55 (great...)...I had bone marrow biopsy...Kappa Light Chain IgG - I was anemic (no ferritin stores, had to have 2 infusions, good now, but now I have low platelets). I have no IgA - apparently my body doesn't make it - explains alot - lot's of ear infections, UTIs....anyway, I see my hematologist on Monday....making my list of questions. I am full of aches every day,,,I am so fatigued...I push myself to get through everyday. Like I said, it was a year before MGUS was found. I almost lost it when one doctor suggested I start meds for anxiety - bc he thought this pain was coming from my thoughts as our mind / body connection is strong. While I believe that is true....please....there is a something happening to my body! Nobody was finding anything. My GP and the rheumatologist decided my pain should be treated like fibromyalgia pain - and they put me on duloxetine (similar thought process to what the former doctor was trying to say but delivered in a way that I could accept, understand - makes a world of difference). Duloxetine has helped, a bit. All the best to everyone here.

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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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@colleenyoung

Welcome, @whitepine66. Yes, the waiting game is rough. Even if your MGUS develops into MM (or when as your oncologist prepared you for), treatment may still be watch and wait for a time. Enjoy feeling great and continue to do the things that bring you joy. What keeps you busy and brings you joy?

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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!

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