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Does anyone else have MGUS?
I was diagnosed with MGUS last October and although I've done a lot of research, I feel there's still so much I don't know. Does anyone else have MGUS?
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@dazlin, were you able to discuss your foot pain and fatigue with your Primary? I don't know what tests you had to confirm MGUS, but maybe they should delve a little deeper. For instance, you could get nerve testing (EMG/NCS) to determine whether your symptoms are due to neuropathy, and if so, what sort of damage is occurring and to which nerves. That can make a difference for diagnosing the plasma disorder and for treatment.
My PCP gave me a referral to one. Have you asked your doctor for one?
Hi all. Could anyone recommend a hematologist/oncologist in the Washington DC/Northern Virginia area who specializes in Multiple Myeloma and related diseases? I am currently diagnosed with MGUS. Thank you so much!
@dazlin
I definitely support your asking questions. I was a medical social worker for 15 years and assisted patients in conferences with their medical teams. I always encouraged patients to write down their questions and either ask for a phone or in-person conference during which to ask all these questions until they understand the diagnosis and course of treatment for the disease and all symptoms.
Doctors can be intimidating but you are important and need information. Don’t put it off.
For me, I get aches and pain which is probably age-related, but I still tell my doc about it. I have no idea if there is any significance unless I ask and they examine. So far, so good. I feel fortunate that my numbers are fairly stable.
Wishing you the best outcome. I hope that one of the questions on your list is “why are we waiting a year for an exam?” Even if that long wait is medically defensible, if it makes you anxious, they should bump it up.
Patty
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3 Reactions@gingerw , sorry your going through alot!! Good hear your keeping up with everything and travels. My best to you!!
I used to go every 6 months, then I had a very caring, thorough dr that moved me to 4 months. He is no longer there. Now since last year I have a new dr, that said once a yr is ok, although I didn't get to see him, as I mentioned. I think the mgus is so slight, and with no progression they feel it's ok. It really depends on who you get🤷♀️.
I'm really not sure if I want to stir up anything right now, especially seeing my labs are mostly in normal range. I wish I could somehow, just let someone know up there, about my last visit, and I will not be mislead next time about seeing my Dr. Kinda disappointed I didn't get answers to my burning aching feet....I told her I had to get a stool for the kitchen so I can continue cooking, etc and get off my feet.
Her notes are off too...she doesn't mention that, and says mild fatigue...WHAT!!
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1 Reaction@michaelal, thank you for sharing your condition, and im sorry you are dealing with all that.
Honestly, I really thought my complaints would have been addressed right there at mayo, as usual. They could have ordered tests or a neurologist. My guess, is the assistant I saw went entirely by my labs, all stable...so I was dismissed.
dazlin, I have had MGUS for two years now (also have Waldenström's non-Hodgkin's lymphoma) but my neurologist said it would take about 3 years to heal the nerves that are causing my burning, pain, tingling and numbness from my neuropathy after my IgM, and light chains are normal - which is not yet. So, I think it's a waiting game, sorry to say. But everyone is different. Do you have a neurologist who has experience with MGUS, DADS, CIPD neuropath? Most seem to deal with stuff like diabetic neuropathy - which is true of my Neurologist, but he is consulting with a colleague that does (and did my EMGs).
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1 Reaction@dazlin I drive over 2 hours each way to my specialist team, and can certainly relate!
Fatigue can have several contributing factors, including the MGUS, and other health concerns all jumbled together. I am on daily dialysis, plus have fibromyalgia,so my myeloma seems to sleeve right into the fatigue factor.
If one test is stating positive for MGUS, you may want to inquire if they truly want you to wait a year?
Ginger
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1 Reaction@gingerw , thank you for your helpful reply. Last night I got 2 more results, one saying positive for mgus, flagged it. I'm supposed to go in 1 yr, I'll definitely ask if that will include an examination and let them know I haven't had one. Otherwise, ill do the labs and leave. I've never complained to them for the body/foot aches, but have every time about fatigue that hits me hard. They have
no explanation. I think right now I'm feeling very overwhelmed, I'm sick, probably a flu I caught from my grandson, hes 4 yrs.
I do mammograms there, dermatology, and I see an audiologist also...so the trips take a toll on me. 96 miles one way, and I always get my house and cooking situated the day before. I just like being organized. I see primary dr on the 12th, maybe I'll complain 😏. Will definitely ask him about the painful bump on my foot.
I appreciate your reply...maybe I need a push.
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1 Reaction@dazlin Stable numbers are a good thing! An early holiday gift for you, healthwise!
Trends in blood tests are the best way of monitoring our chronic condition, which MGUS is. As you have read here, we often go many years with no advancement of the disease process to smoldering myeloma. Many of us have quarterly tests that eventually stretch out to every six months. You certainly can ask your team at Mayo why there was no physical exam, and listen to their answer. My hematologist oncologist will check my lungs and heart each time, plus lymph nodes, pulse, and legs for swelling.
Ask your primary about the fatigue and foot/leg burning. He may want to have some baseline tests done, or look at what Mayo did. Has Mayo addressed these with you in the past?
Ginger
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