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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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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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
I found this link to clinical trials open and have yet to open for MGUS:
Maybe, you'd like to scan them to consider participating OR as I did, to learn what may eventually be considered in the future (or ruled out) for us MGUSers.
@nolarn Thank you for the compliment. I'm all for research that will help point the way to slowing down/heading off advancing illnesses of any kind! So many times it takes stepping out of the box of what may be deemed conventional medicine and bravely looking at things in a new light, from a new viewpoint.
While research seems to point to the idea that there is no clearcut cause of MGUS, it is my belief [your mileage may vary!] that some people have a proclivity to certain maladies, or malady families as it were. For me, it is several different autoimmune conditions, as if my body is entertaining its own little civil war.
Would I have loved to be part of such a study for MGUS? You bet! As an active multiple myeloma patient, if I could assist in any way, I would be happy to. Did you notice that Dr. Irene Ghobiani trained at Mayo Clinic in Rochester, MN? Nothing ventured, nothing gained, in the field of blood cancer patients, and helping everyone to live their best lives possible!
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?
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.
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?
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.
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!!!!
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