1. < Blood Cancers & Disorders

MGUS: Please, let me know I not alone

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

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dazlin | @dazlin | Mar 24, 2018

Justin, I just received my itinerary...they have scheduled me to see my oncologist nurse, instead of the dr. I'll go along, since it's just bloodwork. ( I wanted to switch drs) If anything spiked, I feel to find another oncologist. I also emailed them about this nurse accepting my insurance, since, she was taken out of network during my last visit . Took me 6 mos to battle. I now was told to contact billing to inquire whether Mayo covers this visit with her. I'm in a rough place as we speak, losing a beloved dog in Feb. and now, shockingly, a few weeks later, my best boy Maverick, (silver Lab)with bone cancer. SO STRANGE, I'M HERE FOR CANCER, NOW MY DOGS HAVE IT??? So ill make my calls when I can . I'm beside myself. One moment, at a time here. Just wanted you to know, since you took time out for asking. Thank you for asking...Linda

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5 replies
dazlin | @dazlin | Mar 1, 2018

I haven't called oncology dept yet, but I will next week. Hopefully they'll give Drs I can review and make sure my medical insurance covers. I really appreciate you asking!

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2 replies
dazlin | @dazlin | Mar 1, 2018
In reply to @dazlin "Anyone in Jacksonville Mayo Clinic ...I would like to know who you use for your Oncologist..." + (show)
@dazlin

Anyone in Jacksonville Mayo Clinic ...I would like to know who you use for your Oncologist Dr in the myeloma field...Please share.

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Yes Justin, I called scheduling. They gave me #to oncology dept. I don't know which Drs handle MGUS or myeloma.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Mar 1, 2018
In reply to @dazlin "Anyone in Jacksonville Mayo Clinic ...I would like to know who you use for your Oncologist..." + (show)
@dazlin

Anyone in Jacksonville Mayo Clinic ...I would like to know who you use for your Oncologist Dr in the myeloma field...Please share.

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Hello @dazlin, if you don't mind me asking, have you sought out an appointment at Mayo Clinic Jacksonville?

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Mar 1, 2018
In reply to @oldkarl "@bonniecanby You should know that the symptoms you mention, anemia, pvc's and lots of pain, are..." + (show)
@oldkarl

@bonniecanby You should know that the symptoms you mention, anemia, pvc's and lots of pain, are typical amyloidosis symptoms and signs. You are free to download/read my story at https://bit.Ly/1w7j4j8 i have about 200 symptoms & signs of amy. Of course, some may be related only secondarily, but they all spoken of by current literature. Morey Gertz of Mayo, and the Amyloidosis Foundation.com, and Alnylam Pharmaceuticals and other sites you can read. It is much easier now to diagnose and define various forms of Amy, incluging MGUS, MM, AL, Alzheimers, Familial fatal insomnia, etc. Today's great clinics and labs can help you, but very few local labs can do anything. Mayo-MN, ARUP, Sloan-Kettering, Mass-General, Stanford, etc. can do it.

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Hello @bonniecanby, you mentioned awhile back that you were having a surgical consult? If you don't mind sharing, how did it go?

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dazlin | @dazlin | Feb 28, 2018

Anyone in Jacksonville Mayo Clinic ...I would like to know who you use for your Oncologist Dr in the myeloma field...Please share.

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2 replies
bonnie canby | @bonniecanby | Jan 17, 2018
In reply to @oldkarl "@bonniecanby You should know that the symptoms you mention, anemia, pvc's and lots of pain, are..." + (show)
@oldkarl

@bonniecanby You should know that the symptoms you mention, anemia, pvc's and lots of pain, are typical amyloidosis symptoms and signs. You are free to download/read my story at https://bit.Ly/1w7j4j8 i have about 200 symptoms & signs of amy. Of course, some may be related only secondarily, but they all spoken of by current literature. Morey Gertz of Mayo, and the Amyloidosis Foundation.com, and Alnylam Pharmaceuticals and other sites you can read. It is much easier now to diagnose and define various forms of Amy, incluging MGUS, MM, AL, Alzheimers, Familial fatal insomnia, etc. Today's great clinics and labs can help you, but very few local labs can do anything. Mayo-MN, ARUP, Sloan-Kettering, Mass-General, Stanford, etc. can do it.

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I am going to mayo on fri. for a surgical consult. here in az. Thanks for your info. Maybe they will recheck the blood results from Illinois.

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dazlin | @dazlin | Jan 17, 2018
In reply to @momofthree1 "I am sorry, I just saw your post . I know your pain as we are..." + (show)
@momofthree1

I am sorry, I just saw your post . I know your pain as we are now five years into this and nothing is headed up on the scale of good vs bad. Best of luck to you and yours

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Yes Justin, I'm on it for osteoporosis, MGUS being a contributor. I'll check out that link you sent, THANKS!!

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 17, 2018
In reply to @momofthree1 "I am sorry, I just saw your post . I know your pain as we are..." + (show)
@momofthree1

I am sorry, I just saw your post . I know your pain as we are now five years into this and nothing is headed up on the scale of good vs bad. Best of luck to you and yours

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@dazlin,

If you don't mind me asking, are you taking actonel because of osteoporosis? If so, I think you may be interested in the following discussions focused on osteoporosis and the treatment and side-effects:

- Treating osteoporosis, https://connect.mayoclinic.org/discussion/hi-im-new-to-the-site-and-am-interested-in-treating-osteoperosis/
- Side effects of bisphosphonates, https://connect.mayoclinic.org/discussion/side-effects-of-bisphosphonates/

Each of these discussions has members that have discussed actonel and its side-effects.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 17, 2018
In reply to @billh "MGUS has a long name and what it means is that there is an extra M..." + (show)
@billh

MGUS has a long name and what it means is that there is an extra M protein in your blood. I was diagnosed with this about 5 years ago and my blood is checked every 6 months to make sure that the protein level is stable. I have no special diet or any treatment. I see a hematologist/oncologist for monitoring. If the protein level changes, then further testing is needed. Yes it is kind of like a time bomb, but I have my faith and that allows me to keep going.

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Hello @billh,

It has been awhile since you have posted. I just wanted to know how you were doing with your MGUS? We have some new members who may be interested in hearing from you and your experience with your journey with MGUS.

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