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@1oldsoul

Great article @gingerw. I am three years into my MGUS journey and hadn’t read that one. I’m not sure if you and others here have experienced the following. Do most of the hematologists out there continue to state there should be no symptoms with MGUS? The two I have had (I asked to be transferred to one closer to my home) tell me the above. And yet when I have read so many comments over the years in this forum it seems so many are experiencing symptoms. For me, it it always the unknown that is most difficult to accept. If you have an illness/pain/symptom and have a name and diagnosis, you can move forward with treatment and a game plan or at least acceptance When you are told that MGUS does not cause symptoms, it becomes a never ending list of other doctor/specialist appointments trying to figure out what is causing the symptom. Then, if all the other specialists tell you they could not find anything wrong, you are left with the feeling that it must be the MGUS.

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Replies to "Great article @gingerw. I am three years into my MGUS journey and hadn’t read that one...."

@1oldsoul In my experience, I have other health issues occurring at the same time. What to attribute to which concerns? There isn't a hard-and-fast rule book, in my humble opinion. Not all hematologists are well-versed in MGUS/SMM /MM and may not be aware of the subtle signs we patients may see.

MGUS is basically a condition that takes monitoring on a regular basis. As our bodies deal with it, our general health does also, and it might manifest in small ways. Sometimes the only way we see the changes is by looking backwards at things, it can be that unnoticeable. MGUS does not mean it will automatically morph into smoldering myeloma, and you could go many years with no further issues, no further advancement. This is the general consensus.
Ginger