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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Yes I have had two reds scans and both mentioned bad osteoporosis! But so far no pain or bones broken! I am 84!
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!
Just saw this post. I wonder if there’s a gene that links lMGUS with Hashimotos’s (autoimmune hypothyroidism and hyperlarathyroid. I was diagnosed with the first two within months of each other and one or 2 years prior to that hyperparathyroidism, or maybe one causes another.
I read several studies on BCMA levels and MGUS progression. sBCMA levels were noticed to increase as MGUS / smoldering progress to Myeloma or related. Then I read studies to see if there was a way to decrease BCMA levels with diet. I did not find a study on this but did find elevated BCMA levels are correlated to increased cytokines. Omega 3 increased in our diets does have studies showing it can help decrease cytokine levels. I found this interesting and wanted to share in case anyone likes to research diet/health (my passion) and get their MDs opinion 😉
You are not alone! I have been diagnosed with Mgus for about 2 years. I also have peripheral neuropathy which one doctor said was associated with Mgus . I would like to know if anyone else has a neuropathy associated with Mgus diagnosis .
I have had MGUS since about 2009, with no conversion to Multiple Myeloma. I had high calcium, but that proved to be due to high parathyroid hormone. Right now I have borderline anemia and a bunch of other stuff that may or may not be related.
I have had peripheral neuropathy, since about the same time period, but I also have diabetes. Neuropathy can be caused by several things, so it may be unrelated to MGUS. If your neuropathy is related to MGUS there would probably be other symptoms, and it probably would not be called MGUS any longer.
I have been around the bend with this diagnosis multiple times. I have searched the internet and worried unnecessarily. I am up for another round of blood work and bone marrow biopsy, just to stay up on things. Now I don't worry until something definite is found.
@anng53 Welcome to Mayo Clinic Connect, Ann!
You're right that peripheral neuropathy can indeed be related to other conditions. Sometimes, it seems that if there is already a diagnosis of something that may relate to a condition, a doctor may lump that in with it. It can be much less work to do it like that, rather than checking to see what it may be really to. At least, that has been my experience in the past.
My neuropathy started about the same time I went from smoldering myeloma to multiple myeloma. It is still a situation I deal with, and will probably not be going away anytime soon. Dang it! For me, it affects my left leg from knee down, and my hands.
What is BCMA?