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, janemichele
Sounds like me! No pain…kind of forgot I was diagnosed with mgus!! Have other health issues but compared to all my friends who do not have mgus, I am doing the best of all of us!! I just attribute some issues to older age!!! Go in Every six months. for blood work. No tests on bone marrow etc. Mainly I get tired day after I have done anything g extra! Used to have numbness in legs but that disappeared .
With covid19 now so rampant, I stay away from Drs.! That is big worry now for us!!!
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I have thyroid nodules..more every year…was told Hashimotos disease..no treatment…also take d2…no idea why! Wonder now if any of this relates to mgus. D2 for osteoporosis I guess but no falls, fractures or pain!! Thank God!!
Liked by Nancy, Volunteer Mentor
@cctoo, it would be interesting to ask your doctor about the possible relationship between Monoclonal gammopathy of undetermined significance (MGUS) and thyroid issues. People with MGUS are known to be at an increased risk of bone fractures. You'll want to careful to lower your risk for falls. I'm glad to hear you don't have any bone pain. Have you had a bone density test?
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Yes I have had two reds scans and both mentioned bad osteoporosis! But so far no pain or bones broken! I am 84!
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Coleen, my tablet changes words!! It is Dexa!! My name is Carleen and often called Colleen.
Hello Carleen, The last time I was at a multiple Myeloma conference was a few years back but at that time, there was no really great understanding of why some people got full blown myeloma, and some people never did. That being said at that time many people finished their long lives without ever getting it. The other tidbit of information I can give, and it really is a tiny bit, is that my husband developed an under active thyroid after 8 years with myeloma and many treatments down the road. This is well controlled with a daily medication. We are 10 and half years into the journey with multiple myeloma, he was diagnosed with advanced myeloma with bone disease, he is doing well. I remember being in my oncologists office 16 years ago and Mike Katz was on the cover of a cancer magazine because 10 years with myeloma was nothing short of a miracle, now it is a lot more common. If you have MGUS, live your life watch the numbers when you should, be kind to your bones and your kidneys, and try not to spend your time worrying.
@auntioakley This is fascinating, reading about MGUS and thyroid. Thank you for sharing what you and your husband have experienced. I still maintain the body is such a miraculous machine. There is so much we are finding out every year about how all the systems interact with each other!
Ginger
Liked by Nancy, Volunteer Mentor, auntieoakley
@stuckonu
So Teresa, I hired a health care profession who is very positive and send morning greetings everyday. How can one not be grateful for her presence? I even tell her often, maybe everyday! On the same theme, she had a near fatal event so I do things with and for her. I’m very grateful that I put my complaint bag aside and it makes me feel good to do it. I never forget that bag that I leave behind and I’ve already heard from many to “ fa’getta bout it “ maybe if I believed in wishes or hope I might get dementia so I can just put it away.
I’ve become very negative about the whole medical field in general and as much as people like “ sharing “ their concerns and maladies they don’t like hearing a trashing of the system that they surrender to.
So, for instance I carried the 7 page report about the biopsies done in 2017 where “ MGUS “ was mentioned on half of the pages. My VA doctor ordered follow up testing and everything came back “ negative “ Good right? But as I saw it I wanted to know why the hospital that did the biopsies never discussed, showed concern, ordered more definitive testing as: the nodules were discovered in a cervical MRI the lead to the biopsies with no mention of Hyperparathyroidism and their GOOD NEWS was NO CANCER! Also no plans going forward. I have no voice and when I told the same doctor the no one seems interested or concerned about my voice he replied: “ I resent that! “ 1 hour with him. He listen to my heart from my back. No blood work or urine test when the last test had: blood and calcium in urine, extremely low vitamin D and two other chemical in my blood suggesting Hyperparathyroidism. I’ve been taking 50,000 units of D2, every 4 days 2000 Units of D3 liquid several times a day in coffee and juice fortified with D and Calcium, but perhaps his “ RESENTMENT “ effected his behavior.
One week later my concierge doctor did the D test and reported that it’s on the low side of normal.
I wonder what DXs come and go?
One last curiosity: I did a search for most missed diagnosed illness are since two best friends suddenly passed away from misdiagnosed ALS. Pretty scary to me
Liked by Teresa, Volunteer Mentor, Nancy, Volunteer Mentor