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MGUS: Please, let me know I not alone
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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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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3 Reactions@bonnicanby I have lambda IGG MGUS and Small Fiber Neuropathy
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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2 ReactionsJustin, 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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1 ReactionTravelgirl, 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.
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.
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
@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.
@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.
@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.