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bonnie canby (@bonniecanby)

MGUS: Please, let me know I not alone

Blood Cancers & Disorders | Last Active: Jan 19 5:56am | Replies (86)

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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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Replies to "I have just been told I have lambda IGG MGUS and small fiber neuropathy determined from..."

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

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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