MGUS

Posted by bonnie canby @bonniecanby, May 21, 2012

i Have gotten desperate enough to try to get an appointment at Mayo in minnasota for mgus. anyone out there that is also been diagnosed with this time bomb.
I am also suffering with anemia and pvc’s and a lot of pain. please let me know that I am not alone. bonne

Liked by maryy

@maryy

@bonnicanby I have lambda IGG MGUS and Small Fiber Neuropathy

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I am now in year 3 of treatment, and in remission. Hope reigns because of the continual options for care. Keep asking questions, pay attention to all good opportunities, and be kind to yourself. You can do this.

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@1nan

I am now in year 3 of treatment, and in remission. Hope reigns because of the continual options for care. Keep asking questions, pay attention to all good opportunities, and be kind to yourself. You can do this.

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I was diagnosed with MGUS a year ago. I had insisted on a new nephrologist due to clinic practice issues. I am also a kidney patient, at stage 3b. My new Dr saw lab work that indicated problems, and sent me to the hematologist oncologist. After scans, more bloodwork and bone marrow biopsy, I am now being monitored for MGUS, and was most recently at 5%. I am eternally grateful for my new kidney Dr, as she told me the labs showed this should have been addressed earlier. We chalk it up to my old HMO just not wanting to address actual problems.
Ginger

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@gingerw

I was diagnosed with MGUS a year ago. I had insisted on a new nephrologist due to clinic practice issues. I am also a kidney patient, at stage 3b. My new Dr saw lab work that indicated problems, and sent me to the hematologist oncologist. After scans, more bloodwork and bone marrow biopsy, I am now being monitored for MGUS, and was most recently at 5%. I am eternally grateful for my new kidney Dr, as she told me the labs showed this should have been addressed earlier. We chalk it up to my old HMO just not wanting to address actual problems.
Ginger

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Stay alert, and keep being your own best and informed advocate. And in between, enjoy a good life of your own making.

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I was diagnosed with mgus in 2003. I saw a Dr in hematology but since see an oncologist. It really isn't that much of a time bomb. I have to go to the cancer clinic twice yearly to have labs done, then a week later to see the doctor. In all these years there hasn't been any problems, I have smoldering mgus. The labs results are 3 areas and are a graph. The only problem was I got anemia which was a shock because I didn't know it. I had to have an iron infusion, and the Dr thought I would need that every 6 months, but 3 years later my iron is always checked and no problems. Of all the time bombs in medicine believe me don't get scared.

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@anniemaggie

I was diagnosed with mgus in 2003. I saw a Dr in hematology but since see an oncologist. It really isn't that much of a time bomb. I have to go to the cancer clinic twice yearly to have labs done, then a week later to see the doctor. In all these years there hasn't been any problems, I have smoldering mgus. The labs results are 3 areas and are a graph. The only problem was I got anemia which was a shock because I didn't know it. I had to have an iron infusion, and the Dr thought I would need that every 6 months, but 3 years later my iron is always checked and no problems. Of all the time bombs in medicine believe me don't get scared.

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We always taught our children, "Be smart, not scared." That lesson applies to everything. That set them up for the other lesson, believing us when we told them, "It isn't time to worry." Funny how "time to worry" never seemed to happen.

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I have just been told I have lambda IGG MGUS and small fiber neuropathy determined from blood and urine testing from hemotologist and neurologist. I am scheduled for a full skeletal X-ray, labs, and a bone marrow hip extraction tomorrow 10/29/2018. To further complicate things I have polycystic kidney disease and had a kidney transplant in March 2018 at Methodist Transplant Hopsital in San Antonio, Texas. I had a living donor and it has been a very successful transplant.! I had a brief sign of rejection and was given a week of plasmapharesis and velcade. The treatment resulted in neuropathy in my hands, lower legs and feet. My new kidney is now working great! I’m on lots of anti rejection meds to keep me from rejecting my new kidney. I am devastated to think I have this blood disorder that may develop in multiple myeloma and cause me to lose my new kidney! How could they treat me for MM and also save my transplanted kidney? I need a hospital and doctors who can coordinate all of these issues! I long to be healthy and happy!

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@deb25

I have just been told I have lambda IGG MGUS and small fiber neuropathy determined from blood and urine testing from hemotologist and neurologist. I am scheduled for a full skeletal X-ray, labs, and a bone marrow hip extraction tomorrow 10/29/2018. To further complicate things I have polycystic kidney disease and had a kidney transplant in March 2018 at Methodist Transplant Hopsital in San Antonio, Texas. I had a living donor and it has been a very successful transplant.! I had a brief sign of rejection and was given a week of plasmapharesis and velcade. The treatment resulted in neuropathy in my hands, lower legs and feet. My new kidney is now working great! I’m on lots of anti rejection meds to keep me from rejecting my new kidney. I am devastated to think I have this blood disorder that may develop in multiple myeloma and cause me to lose my new kidney! How could they treat me for MM and also save my transplanted kidney? I need a hospital and doctors who can coordinate all of these issues! I long to be healthy and happy!

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I have always said to go where they "see the most, know the most and do the most " of your particular condition(s). That took me from PA to Mayo in MN in 2003 when I had a known year of MGUS behind me,then diagnosed with multiple myeloma in 2004. Do the math. I didn't start treatment until 2016, years in double digits later. Followed vigilantly at Mayo and at home, by professionals who communicate with me and with each other, I have seen my options for care and survival grow over time.
Good luck as you move forward with much reason for hope.
Nancy

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@deb25

I have just been told I have lambda IGG MGUS and small fiber neuropathy determined from blood and urine testing from hemotologist and neurologist. I am scheduled for a full skeletal X-ray, labs, and a bone marrow hip extraction tomorrow 10/29/2018. To further complicate things I have polycystic kidney disease and had a kidney transplant in March 2018 at Methodist Transplant Hopsital in San Antonio, Texas. I had a living donor and it has been a very successful transplant.! I had a brief sign of rejection and was given a week of plasmapharesis and velcade. The treatment resulted in neuropathy in my hands, lower legs and feet. My new kidney is now working great! I’m on lots of anti rejection meds to keep me from rejecting my new kidney. I am devastated to think I have this blood disorder that may develop in multiple myeloma and cause me to lose my new kidney! How could they treat me for MM and also save my transplanted kidney? I need a hospital and doctors who can coordinate all of these issues! I long to be healthy and happy!

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I am so sorry for all your problems. But don't be devasated. It is a very small chance. You have a better chance of anything else. I have had it since 2005. I have had 3 complete skeleton exrays, takes about 15 mins. 2 bone marrows, and that is not a big deal. I have had anemia and needed an iron infusion. cancer Dr thought I would need one every year, so far just one. that was 3 yrs sgo, I have type 3 kidney disease, I have 2 other rare diseases. Ehlers- danlos syndrome. Also sjogrens sydrome, most teeth gone. Rheu. Said it is my primary disease because sjogrens can affect all the organs. I have severe itching on arms since 88, just found it on this sight, related to my cervical vertebrae problems, disbetes, severe hand tremors, can't test. Lupus not active, ms, fibro since 1984. epilepsy which is only my voice tremors sometimes, will never get worse. Severe narrowing of my vergebrae, had 8 shots in back at once, did not help, scoliosis. had to lay very still on my stomach hurt bad! I have lots of strange things no one can figure out. My cerebellum is shrinking, that is atrophy! My brain is dying, faster than most, but stable since it was found 2003, and that is 100 times worse than mgus (my mgus is smoldering). I have to worry about Alzheimers.There is no cure, nothing can be done. My sister died at 74 low heart rate like 20! I started getting sick at 40. No one else had anything. My sister also had ms. brother-in-law 2nd cancer. It's the lottery of life! I have neuropathy all over. I have been falling since 88, just in the last 15 yrs, have fallen over 75 times 2 double compound fractures each leg, first fall, I fell on porch with dog in Tucson middle of summer, I screamed for half an hour, our sub was built on a snake den, rattlesnakes. Someone heard me. 2015 fell broke left fibula, Dec 2015 double comp right leg, rods in each. Had to crawl down to hall.Bad hospital checked out after 3 days,icy cold, have scooter, son about killed me. All my falls I had to crawl. I use a walker since 2001, But of all the horrible diseases out there, children's awful things. So in 1984 went to bed feet tingling, some at 4:30 am 95% paralyzed, all blood shot eyes,voice in well no one knew, gone next day.I plan on dying after 100.

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My hematologist tells me MGUS is not a disease and does not require treatment. She says I simply have a 5% higher chance of developing Multiple Myeloma than the general population. I hope she's right because I've decided to stop the yearly follow up appointments.

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@susangs

My hematologist tells me MGUS is not a disease and does not require treatment. She says I simply have a 5% higher chance of developing Multiple Myeloma than the general population. I hope she's right because I've decided to stop the yearly follow up appointments.

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In 2002 a Rheumatologist picked up one blood elevation that led him to discover MGUS. From that point forward I worked with a local hematologist /oncologist and a doctor at Mayo Clinic in Rochester. Life went on as normal, no worry, with 6-month check-ups until 2004. A baseline bone marrow study revealed MGUS was now multiple myeloma. The only life change was Labs every 3 to 4 months without worry until 20016 when Labs indicated I had to start treatment for the meloma. I did not have to wait for disease symptoms and/or damage to indicate advanced disease, need for treatment. Yes, I had medical issues over those years but they may have been there without the MM. Today I am near remission for the second time, hoping for a vacation from treatment in the not-too-distant future. My faith kept me from fearing this disease and I have been able to give hope to other MM patients along the way. I will be 78 this year, and still enjoying life. Side effects of treatment are sometimes in my way, but I find things to do during those times to keep giving meaning to my life. We all make decisions that give us the most peace. I saw great advancement in treatment from 2002 to 2016. Saw birth of 9th grandchild and 3 great grandchildren, weddings and graduations, traveled, climbed boulders in CA, wrote books, and served God in many ways. All with peace that health was confirmed every 6 months. Nothing to fear, no cause for worry.
Life is still great. I know my enemy and choose the battle. Not everyone can say that.
Blessings to you going forward. Nancy

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That's lovely Tnan. I wish I had doctors like yours.

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@susangs

That's lovely Tnan. I wish I had doctors like yours.

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Maybe you can make it happen?

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@lisa54

you are not alone…I go to Roger Maris Cancer Clinic in Fargo ND. I live at the border of MN in a city called Moorhead. It’s a long drive to Mayo Clinic in Rochester. Feel free to send me a line

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I have driven to Mayo Clinic from south central PA since diagnosed with MGUS in 2002. We call our trips vacations. Please see my detailed 3/31 post for history.of my journey. I hope it gives some hope and encouragement to you.
Nancy

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I was diagnosed 6 years ago but wonder if the Oncologist diagnosed correctly?? because I have been seen at Moffits,UF Shands,Mayo all to be treated as is " What are you doing here" and felt as if i was taken up valuable time when others in real need could be seen. I do not feel MGUS is a timebomb. Having
life limiting objective signs symptoms which have limited my ability to function. Being undiagnosed, suffering with pain and other troublesome symptoms are more comparable to a time time bomb as every patient (human being) has the right to be heard and treated with dignity. And yes I also have been anemic and currently taken B12 injections, have a L clavicle visible hard lump, which a doctor said was pathological fracture, lost 4 inch height loss and at 62 learned just recently i have Thoracolumbar dextroscoliosis? and have had increasing high urine proteins with last levels in 24/hr urines highest 900 but in my case they mean nothing. I wish anyone with a MGUS Dx. well as you can have a abnormal protein for decades and it means nothing. I would just see a Hem/Onc when they say you need to return. For me MGUS has muddied the waters. Moffits Dr. Baz who did spend some time to explain plasma symptoms and MM so that is what you need to be aware of. I can not remember what they were but you can ask or google. Good luck

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I was diagnosed in 2005 with smoldering mgus. I see the cancer Dr twice yearly for labs, and I have had anemia and had an iron infusion. If I move I will be told oh once a year is enough, then I see another am told twice a year. I would rather be safe. I have 4 rare diseases and about 5 autoimmunes though and ms and it seems every couple of years another diagnosis. But I get infections and inflammation which are now being said to cause so many diseases. It is frustrating, but so are a lot of problems in life, so I am happy to have this support.

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