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

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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@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

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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@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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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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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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@dazlin

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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@dazlin, thank you for the update. I am really sorry to hear about your dogs. I have two dogs myself, one is 12 and one is 11 and I am dreading the day they are not part of our family. One has some tumor growths, but he is 12 and they do not bother him.

I can understand why seeing a nurse may seem different, but nurses, nurse practitioners and physician's assistants at Mayo Clinic are quite capable and an integral part of a collaborative model of healthcare. Even though you may not see the particular physician you were hoping, your charts, results and appointment notes will ultimately be reviewed by a physician. As far as billing goes, it would be best to contact them as they will be able to help you with those questions. I like your approach, one moment at a time.

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@dazlin

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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@dazlin My Yellow Lab died from Lymphoma, and I was diagnosed with Follicular Lymphoma 4 yrs later. I thought it was strange as well that both me, and my dog were diagnosed with lymphoma.

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@dazlin

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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@dazlin When I contacted Mayo Clinic in Jacksonville they worked directly with my insurance, and had everything pre-approved for billing prior to my visit.

There was one test I had done. Which they said up front it may not be covered. It was genetic testing to determine if I had Lynch syndrome ? My insurance did happen to cover it in the end. Talk with their billing department they are very up front on everything.

Also they wanted all my medical records current and old. They read through all my records and found a Dr on their staff, who was able to handle severe Gerd, H-Pylori and an Ulcer in my Cecum. The Gi Department checked me out so well. That they found hiding under the Ulcer stage 1 cecum cancer and Follicular Lymphoma.

If you never been to Mayo Clinic? They are the top notch, I been a patient now over 2 yrs. Every visit, procedure and care has been the best I ever experienced.

And trust me I had some extremely bad experiences in hospitals and with Dr's in the past.

I wish you the best.

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@dazlin

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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Travelgirl, yes, I've been a patient in Mayo since 2013. I agree, they dont leave any stone unturned. As far as this medical team, I see…there was an error on Mayo's part as far as updating this particular nurse into the system. So my insurance said she was currently out of the network. Billing had no idea about this, since they are not the ones that update the systems and they kept saying it was my insurance's error. After 6 mos of dispute, they FINALLY realized the error was on their part. Now, before I go again, I'm going to try somehow to make sure, I'm covered. I can call my insurance too, but that's usually a run around, and wait. Thanks for your reply, and gosh I'm sorry you've been through a lot, but glad your getting help. Linda

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@dazlin

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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I'm still taking care of my dog Maverick, with osteosarcoma. It's been 3 weeks since diagnosis…so I'm not planning a thing. I take it day by day. I'll call mayo God willing this week.

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@dazlin

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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Travelgirl, so sorry about your dog…its the worst feeling. Maverick is a silver lab, big boy…was over 100lbs. He lost some weight, but it's ok because his leg can fracture from the mass, so less weight is helpful. I'm cooking special for him, along with his healthy dog food. Take care.

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@dazlin

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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Justin, I've seen this nurse before…she has been very thorough. I have no problem seeing her, it was that insurance mix up. As for me wanting to switch oncologists, is a preference I'd rather not go into here. So far, I'm still MGUS. If my M spike, or ratios spike on this next test, I'd like to see another oncologist…just a personal preference. Thanks for your reply…ENJOY YOUR DOGS, so much love there!

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@j42smith

Hi,
Is there anyone out there that can help me get some insight into the disease. My father was just diagnosed monoclonal gammopathy, and i’ve read some literature, but I want to talk to someone who has actually had a loved one go through the same thing. The doctors are not offering any treatments for him, because of his diabetes, and renal failure. He also has a clotting disorder. The doctors also told us that they do not recommend him for chemo with all of his other health issues.

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Hi. I lived with monitoring MGUS from 2002 until 2004, then followed my smoldering myeloma until I needed treatment in 2016. I saw my physician at Mayo in MN annually, and my local hematologist/oncologist in between. The two doctors communicate about my condition, changes, and treatment. Yes, they actually talk to each other! In June I will be starting my second year of treatment for Multiple Myeloma.I would suggest getting established with doctors you trust, and stay informed about all aspects of your options and treatment. My faith allows me to stay on this journey with no fear. I hope you can make a consult happen, then have care providers who work together and give you confidence in your decisions. This does not have to be "awful". Good luck.

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@bonnicanby I have lambda IGG MGUS and Small Fiber Neuropathy

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