Connect
← Return to MGUS Symptoms: What symptoms did you experience?
Discussion
MGUS Symptoms: What symptoms did you experience?
Blood Cancers & Disorders | Last Active: May 15 3:30pm | Replies (72)Comment receiving replies
I am 45 years old, and I was diagnosed with MGUS September of last year. At that time, I was also diagnosed with Carcinoid Cancer and Mono, they found both MGUS and the Cancer while trying to find out why I was so ill for many months. I now have had the Cancer removed and it has not spread, so as of now we only monitor me every year for Carcinoid Cancer. I am still suffering from extreme fatigue, night sweats, light sensitivity, eye pain, eye redness, low grade fevers and general feeling of unwell, achy. I am told by others I look like I am sick.
I was told by my hematologist that MGUS doesn't cause symptoms most of the time, but I can't help but think that this is making me feel sick. Anyone else have any of these symptoms? I feel like I'm crazy at this point.
Replies to "I am 45 years old, and I was diagnosed with MGUS September of last year. At..."
Oh my goodness, Angie. You’re really going through a rough time right now. Whether MGUS has symptoms or not doesn’t change the fact that you are experiencing unpleasant symptoms and generally aren’t feeling well. Has your doctor checked for any progression of the MGUS?
You’re listening to your body which is telling you that something isn’t right. Have you discussed this further with your hematologist oncologist?
You did mention having Mono and unfortunately, those symptoms can linger for many months and potentially years. Since you recently went through serious cancer surgery/treatment that can leave you vulnerable to the virus. You might have to be your own advocate and push for further testing to find the cause of the continued symptoms. Can you tell me a little more about your carcinoid cancer treatment? Was this just surgery to remove a tumor or did you have chemo/radiation?
Since you’re really not feeling well have you been checked for ongoing Mono? How frequently do you have lab work done?
Well, I can ID. I am 69 yrs old male, confirmed dx 3 wks ago and have been having all kinds of weird stuff for the past 2.5 yrs after having a Prostatectomy done. Symptoms are fatigue, night sweats, below normal temp, neuropathy in hands & feet that is intermittent. My Onc/Hematologist just started looking for MGUS Dec 23, as he was watching my blood counts jump all over the map. Did a panel beginning of Dec, 23 and by March 24 had a bone marrow biopsy that confirmed the MGUS dx. The symptoms have not been attributed to anything else, so I would say it is all related to the MGUS starting sometime prior to my prostate cancer diagnosis. Just recently informed that my Onc/Hematologist is leaving the area, so now I have to find someone that can do the proper monitoring and knows about MGUS.
Connect
Angie, I'm 66, diagnosed with IgA Kappa MGUS 2/15/23, husband died of Multiple Myeloma 7/24/22. Mine was found by my internist during an annual when he said, "you mentioned and have had a history of numbness in your extremities, I'm going to test you for MGUS." I was like, "yeah, sure" as if it couldn't be possible.
Lots more to add, but I have fatigue sometimes that I just push through refusing to be overcome, occasional night sweats, now that you speak of it definitely light sensitivity, but I have blue eyes and just thought it was that, eye irritation, not sure about the fevers, occasional aches, but for the most part feel fine other than some numbness in my fingertips and feet. Steve had a bad, itching rash at one point during his supposed MGUS stage that we went to every doctor we could to try to figure out and no one said, might it be MGUS because "MGUS has no symptoms." I believe he had morphed and our lame oncologist had under diagnosed him - yet another story. MGUS definitely has symptoms. Best wishes to you and all of us. 🙏💜