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MGUS: Please, let me know I not alone

Blood Cancers & Disorders | Last Active: Jun 3, 2023 | Replies (144)

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@stuckonu

Recently I’ve been detected to have elevated PTH levels in my blood. Thanks to someone in the connect family was reading one of my posts about my frustration with doctors not listening and based on other things I said she directed me to this excellent link here at Mayo about Hyperparathyroidism and it sounded a lot like my symptoms. It wasn’t easy to get my PCP to do the blood work but when he did, much to his surprise and mine, not only was that number high but the other blood work was done to DX Hyperparathyroidism and all of those numbers lead to an “ electronic consultation with endocrinology “ who said that it looked like primary Hyperparathyroidism but where this story goes from here for now is secondary to what I discovered yesterday which puzzles me and perhaps complicates things but not only do I not know where any of this goes it seems that none of the doctors I’ve seen after multiple referrals know either. Surprise surprise ( Gomer Pyle. )
I knew that “ lumps “ and “ nodules “ were noticed in my cervical mri back in mid 2017 at the VA hospital in FL My PCP there ordered further testing so the lumps were biopsied and I got a phone calls from my PCP muse who announced: “ GOOD NEWS NO CANCER “ and that seemed to end that problem. Unfortunately I never asked if the lumps needed to be monitored or what were they and what else I should know.
So here we are in 2020 and I have all of these symptoms and mentioning them resulted in arguments with not just one doctor but many doctors.
Yesterday I dug out the report from 2017 and notice in the report this mention of the patient having this extra protein in my blood with ( MGUS ) in parentheses. Never has ANY of my VA doctors mention it or explain it.
Yesterday I attempted to cross reference the two conditions and it seems that researchers must have wondered the same thing and it seems to me based on what I read the lumps on my thyroid and salivary gland along with MGUS should have lead to mindful watching. But that never happened and I wasn’t even told about the MGUS
Now I’m wondering if medicine hasn’t become like Simon Says: if one doesn’t say “ May I “ your doctor tells you nothing.
Days, weeks, months, and even years go by and even now I have to fight for a real sincere assessment.
How is MALPRACTICE defined? My Dad was DX’d with multiple myeloma late in his life as he was coping with prostate cancer he decided against any aggressive treatment against the MM. He lived to 92 with all of the parts that God gave him except his tonsils as he used to say.
Isn’t it important for doctors to have a verbal record of family history? And shouldn’t that be reviewed every few years?
I think so.
Meanwhile since this is a weekend and I don’t see the VA doc who has been my PCP since 2008; what should I know about MGUS? That I may not have read on the internet?
Thanks as always!

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Replies to "Recently I’ve been detected to have elevated PTH levels in my blood. Thanks to someone in..."

Hi @stuckonu, you'll notice that I moved your message to an existing discussion where you can connect with other members talking about MGUS. You can sort the discussion by newest to oldest to see the recent posts first.

You may also be interested in these related discussions
- MGUS and osteoporosis? https://connect.mayoclinic.org/discussion/mgus-and-osteoporosis/
- I have MGUS https://connect.mayoclinic.org/discussion/i-have-mgus/

Having discovered the possible diagnosis of MGUS in your medical record, you ask a great question of community members like @1nan @gingerw @anniemaggie @susangs @momofthree1. You asked "what should I know about MGUS that I may not have read on the internet?"

Hello @stuckonu

As it has been a while since you last posted I was wondering how you were doing? Have you seen an endocrinologist about the hypoparathyroidism? Was a treatment suggested for this disorder?