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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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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@roseyd I will be curious what your primary doctor has to say, also! Which autoimmune condition is your dermatologist talking to you about? Has there been a referral to a rheumatologist done for you, to assist you with autoimmune issues, yet?
Until you see your doctor on Wednesday, don't forget to take deep breaths, relax as much as you can, and take time to write down questions you would like answers to!
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❣️🇨🇦
Are you seeing a Urologist. I know they have a treatment today that has something to do with breaking the stone with ultra sound. My son's friend lives in Texas and he had this treatment.
My dermatologist today told me I was just borderline autoimmune disease. I asked if I should see a rheumatologist and she said if you’d like!! I am so upset by all this . I see my primary on Wednesday and hopeful she will take the lead on this and I can get a definite dx. I am making a list of questions to to ask and appreciate your advice. Thank you!
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.
You sound like me. I am in my 50’s and have osteoarthritis everywhere and diagnosed with fibromyalgia. I’m still in testing stage and had protein in my blood and high kappa and ratio. I’m eager to know what hematology will tell me.
Hi, I’m 49 years old and just got an Mgus diagnosis. I’ve been trying to find out all I can and have so many questions. I’d like to connect with other Mgus people with more experience and knowledge. Thank you!
I am also newly diagnosed, but it is a little different for me since I am 92. They have put me on the 3 month schedule and I am not very excited about it. Maybe I should be, but at my age, you learn to accept everything and hope for the best. I developed Trigeminal Neuralgia (worse pain in the world) and my neurologist ordered blood work that revealed the M factor. I was given to believe that if I did not progress any time during the next 6 months I would be put on the 1 year check routine. At my age, how many 1 year checks can you expect. I may have had this all my life and not known it??? I have always had a slightly low Red and White cell count, but not enough for anyone to get excited about it. So it is a waiting game, you may never progress any further. Smile, the sun is shining (I hope forecast for today is rain and thunder). If you can get out of bed it is a good day. I will remember you this day in my prayers.
I was diagnosed with IgM kappa MGUS 8 years ago. Now 82. I think we need to be proactive with appointment making. My wonderful hematologist advises seeing him every six months. However I make appointments to see him every three. It is my thoughtful determination that I’m more vulnerable so I consider more frequent appointments justified.
In the recent past there was a decline to below normal range in my ferritin level. “Low iron without anemia” diagnosis is sometimes of interest to oncologists. I’ll find out next Tuesday…not next June.
I suggest to follow your hunches with making appointments. Sometimes we need to be assertive. You go, Girl! Raye
I do keep my appointments, and I am probably more vulnerable (I have had breast cancer at 36, and a dermatofirosacroma in 1988, and recentely a squamous cell skin cancer), but I try to take these things in stride and just keep on going. For some reason God seems to just keep throwing me back, so I guess I have decided he will take me when he is ready, and my job is to just keep going as long as he wants me to. I have run a boarderline red cell count since I was 20 and no one seems to get very excited. Recently, a small drop in platletts. I am due to see Hematologist later this year. I feel fine, and that is quite an accomplishment at 92. So as long as I can get out of bed in the morning, It is a good day and the sun is shining to day (no rain).
New MGUSers like me may find this of interest:
Via the Multiple Myeloma Research Foundation newsletter, I just learned about this FREE webinar (zoom) to be held next week on April 5, 2023.
It was "developed to help patients (and their families and caregivers) better understand the multiple myeloma precursor conditions MGUS (monoclonal gammopathy of undetermined significance) and SMM (smoldering multiple myeloma)—including what they are, how they develop, and why they’re significant. "
Register here: https://event.webcasts.com/starthere.jsp?ei=1601785&tp_key=da70931f7b&utm_source=SFMC&utm_medium=email&utm_campaign=Patient+Newsletter+March+2023+PSI+RV&utm_content=https%3a%2f%2fevent.webcasts.com%2fstarthere.jsp%3fei%3d1601785%26tp_key%3dda70931f7b
Hi All. I am learning so much about MGUS/SMM/MM through this discussion group. Many thanks to all who contribute. While I still have only MGUS, my blood and urine lab M-spike and FLC values are moving in the wrong direction, and I would like to consult with a specialist at a major MGUS/SMM/MM cancer center. Could anyone in this discussion group tell me whether Mayo, Dana Farber, or Memorial Sloan Kettering is the best place to go and who are some of the best doctors there? I live in the Washington, DC area, but I'm willing to travel anywhere. Thank you so much!
@deborahjb Any of the three places you mentioned are stellar. Personally, I am not a Mayo Clinic patient. However, my oncologist was trained at Mayo Clinic Rochester [MN] and he is well respected here in my state of Oregon. I also know people who have traveled from this direction to Dana Farber for clinical trials dealing with multiple myeloma.
We have a lot to offer to fellow members here, don't we?
You can get started with Mayo Clinic by clicking here: http://mayocl.in/1mtmR63
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