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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All the pains and all the problems came from the moment of the diagnosis, there is an extensive psychological aspect here that affects the brain that transmits pains, currents and more
True. It is a shock.
I'm new here, my wife have MGUS for three years and several problems in her hands and hard pain.
What problems do you have in yours hands?
Sorry for my English
@eulo Welcome to Mayo Clinic Connect. It is great you are seeking information for your wife's situation.
Remember, people can have several different conditions affecting us at the same time, and it might be difficult to separate what it may belong to. For me, I get severe cramps in my hands from time to time, and often comes when I am doing fine motor movements with my hands. When that happens, getting my hands warm often helps alot.
Thank you Ginger. You are one great person, I was reading yours posts several month ago before post yesterday.
My wife is my life, we have 70 years old and 54 together, 4 engaged and 50 married. Now she are sik and I can't do anything. Every day, every hours I see her face, hands and legs, I'm destroyed too.
Even now the hematologist say that her do not need QuimioT.
Thank you Ginger 🙏
@eulo Thank you for your kind words!
Something your wife might try, is to use a good cream on her hands and feet, massaging it into the skin gently. Or you could do it for her, a real treat for you both. It will show her even more how you care for her, and it will feel very comforting. Gentle massage of the muscles can do a lot of good. Keep moving and exercising, that seems to be a key. Often we hear when we stop, is when more problems happen.
You are supporting your wife, and helping her look for answers. That is a big thing, so please do not doubt you are helping her! Until her situation changes away from MGUS, I can understand why her doctor says "no chemotherapy at this time". The doctor will continue to monitor her, and watch for signs if she gets worse. Remember, most people live with MGUS for many years without any problems. Have you asked her doctor if the cramps are related to the MGUS, or part of something else?
Just been diagnosed myself with mgus complete shock as went for rountine blood as my iron was low my head is spinning please let me know if anyone out there has had this a long time with no progression also silly question but do you need special travel insurance i intend to have as many holidays as i can didnt cross my mind to ask at consultation
@hels Welcome to Mayo Clinic Connect! As you read through the posts here, you see a wide range of experiences. Like you experienced, MGUS is often diagnosed while our doctors are checking for something else. The very biggest percentage of time, people go many years without any progression of the condition. Most of us have quarterly labwork done to watch the numbers.
Have you gotten travel insurance in the past?Honestly, it's not something I had ever considered, but then again I am not much of a traveler.
We have a holuday every year always just got normal insurance not sure if you have to have specialust insurance now …..still trying to get my head around things at the moment first reaction was panic no im trying to find out as much as i can dont know anything about levels just that my consultant said simething about 8 and it not being high so next blood test in june i will be prepared to ask questions thanks for reply x
I have had MGUS for 3 years. I have developed low Iron and anemia. Is this common with MGUS? My Dr. told me no more COVID shots because my Iron bottomed out after receiving several booster shots. Want to know if this is just a fluke or does MGUS over a period of time contribute to low iron and anemia.