Connect
I have MGUS
I started having health issues when I was a very young gal around 4. I was told at a plasma center when I was 18 I couldn't donate and I should be the one on the table receiving a donation. The doctor told me to go see an oncologist and I never did. For four years I complained to my primary doctor my symptoms and she finally told me to go see a psychologist. I did as told and they told me to get a different doctor. I did. The new doctor sent me to Roger Maris Cancer Center in Fargo, ND for some tests Sept. 12th, 2012. Within two hours they told me I had MGUS and what to look for as far as symptoms. I went to the doctors every 6 weeks for the first year.(2013) Then I became extremely anemic and hormones way out of wack. Roger Maris did nothing for me. I kept calling the nurse and telling her that I was getting sicker and sicker. Nothing again done. I made an appt with Mayo. Had many tests and stayed for 4 days seeing many doctors. (2014) Now it's 2016 and I spent 3 weeks in the hospital. I have gone from first stage plasma cells to red blood cells to problems with white cells. Always getting infections. Anyone else out there with MGUS?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
I'm getting your emails, but I don't even see my original post from yesterday..it said..new here, MGUS. Where did it go? Am I looking in the wrong place, doing something wrong. I'm on blood disorders forum.
Ok, I see I'm merged here in another discussion. Thanks for the replies jamienolson, and oldkarl. I'm contemplating calling scheduling for a new oncologist, but I'll also need bloodwork, which is ordered by my onc nurse...so, not sure how that will work..??
I'll mention I'm a patient at Mayo clinic in Jax...very pleased with the care..except for this one dr.
Hi @dazlin
Your original post can be found above Jamie's response to you. See it here: https://connect.mayoclinic.org/discussion/i-have-mgus/?pg=2#comment-86767 Your replies are also getting posted. If you are reading the replies from others, like this one, in an email, please click VIEW & REPLY and then scroll through the discussion to see all the posts.
With respect to your question about switching oncologists, it is your right to request a different oncologist. You can call the appointment desk in JAX 904-953-0853 and discuss this with them.
-
Like -
Helpful -
Hug
1 ReactionThank you colleenyoung...i guess I couldn't find it since it got merged with posts from 2016...im glad I looked that far back. Again..thank you for the info, and reply!
-
Like -
Helpful -
Hug
2 ReactionsMy son age 49 has MGUS along with many other problems. He was
diagnosed five years ago. Since then his health has declined so horrible.
I do hope you are doing better. My son was told five years ago that he has MGUS, it has been a study decline with many health issues since. He sees so many doctors that it makes my head spend. God Bless you.
@dazlin Most importantly, Call the clinic and find out. If you don't call, you will never know. Learning comes in strange ways. After 30 years fighting diabetes, I learned yesterday that my A1C is too low, and the doc is concerned about hypo.
Momofthree, sorry about your son. I surely hope he gets the proper treatment!
Thanks oldkarl, I will call the clinic