MGUS Symptoms: What symptoms did you experience?

Good morning. I was wondering if you will please share with us the results of your whole food plant based diet study when you receive them. And could you please copy me in so that I do not miss it when you do post it? I am 70 years old with IGM MGUS since 2021. I am so sorry for the loss of your husband. 🙏

Jeannie, my specialist at Sloan is Dr. Urvi Shah, BTW. As far as eating plant-based, my local specialist told me on my last visit with him that he felt it might be early too say, but it seemed to be working as my labs have remained stable. I will return to MSK for my one year and final study visit and will have a PET-CT, Bone Marrow Biopsy and my usual labs and will learn more as to the potential benefits to date. The study protocol provided a meal plan for the first 12 weeks and I picked up on one after that. Being alone, has made implementing the whole-food, plant-based diet far easier, but at the same time a bit less fun. As my late husband would say, "A burden shared is half a burden." BTW, not expected to be 100% WFPB, but shoot for that and accept 70%.

@1oldsoul I assume when you speak of results, you mean labs, the PET-CT and BMB. Gladly will share. My one year and final study visit will be the week of 18 March. Also, please note my reply to @jeannie215 which I wrote about one minute ago. Thank you. 💜🙏

Yes, I would like to know if you and your physicians feel that the plant based diet had a direct effect on the progression ( hopefully remission) of MGUS. I’m sure there are many here who would be interested!
Thank you for sharing with us.

Thank you for connecting.
I’m very sad and depressed. I have a brain tumour that was operated on and most taken out but monitored yearly.
Two years ago I had a knee replacement. I was told I’d had a heart attack and then I hadn’t. Told I’d had an embolism but no evidence of one. Turned out I’d had pneumonia. I had other knee replaced four weeks ago so still in pain but otherwise went well. In between the two knee surgeries I was told I had MGUS I had asthma but turned out not asthma but heamatoma in abdomen from coughing also that my husband had treatable lung cancer which was symptomless so a shock. Pet scans in Scotland not working so paid to go and have one in London but too late as it had spread and is now terminal.
I have generalised anxiety now depression. My doctors surgery say I’m a hypochondriach and I’m a nuisance as I ring often. Can anyone suggest anything please I don’t get monitored for the MGUS even tho I have peripheral neuropathy in my hands and get a red rash like pinpricks of blood that changes to purple all over my legs and feet. I have asked to change to different GPs but have to wait 40 days so don’t really have a doctor anymore 😢💗

I was diagnosed with
MGUS 7 years ago and
after l did some research l became afraid to follow up in a year as my Oncologist requested. Now I’m having severe pain in my entire body including my hips. I have had Transverse Myelitis for 23 years, and I would just attribute the increase in pain to that disease. But in the past several months I have noticed abnormal labs with a decrease in various blood cells. Now I’m really afraid to go back to the Oncologist. Will l need another bone marrow biopsy? What will they find?

Hello, I was recently diagnosed with MGUS. I have had a series of curious, unfortunate events since August 1st (Now Feb. 20th). I woke up from a nap with severe vertigo. After three days, I completely lost my hearing in one ear. Specialists called it an idiopathetic, neurosensory hearing loss. That was a mouthful, but compared to saying what MGUS stands for, simple enough. Since then, I have had COVID-19, the flu, and a torn rotator cuff. I was convinced my immune system must be shot to hell and visited my M.D. who suspected MGUS. Of course, after the initial fear of MM, MGUS seemed like a runny nose. Since then, I have researched as much as possible and found that hearing loss is associated with MGUS as well as the overwhelming fatigue I experience every day in the late afternoon. (Now I have an excellent excuse to nap! Has anyone else had similar experiences? My oncologist feels that the "mystery" virus that caused my hearing loss could've triggered the MGUS. Any thoughts?

My two cents:

Personally, yes to occasional vertigo, ongoing mild neuropathy, and I fight the fatigue. I find if I push through the fatigue I feel refreshed after a bike ride or trail hike. Maybe it's the increase of oxygen into the muscles? Naps do happen though seldom.

My husband had experienced all of that plus a rash that was incessant and itchy. As I have mentioned on other posts, I believe he was under diagnoses and while we were told and thought it was only MGUS, I now suspect it was SM. When he was suffering with this significant rash, whether it was during MGUS or SM, we went to a Dermatologist, Allergist, the lame Oncologist, and our General Practitioner and none of them knew what to do with it or the cause. So, I am watching for his type of rash.

My hearing is fine, but wondering about my changing left eyesight.

MGUS is some form of an auto-immune reaction, but different for everyone though so who knows.

Do you think the hip pain could possibly be from the MGUS? I have hip pain as well. I thought i may have had an auto immune disease...as of now the rheumatologist isn't sure if its fibromyalgia, osteoarthritis of the hips or due to the elevated protein in my blood causing inflammation hence pain but I'm not too sure about that. I'm still trying to figure it all out.

Please go back to the oncologist. Don't be afraid of the results...you have to be proactive. Good luck.

Best,
Jeannie

Hi,

I was diagnosed this past January with MGUS. I do have the fatigue which is challenging bc I often work 16 hour days. Sometimes when I get home, I crash in my clothes with shoes still on. I do have hip pain and some arm pain. Still trying to figure it all out. Good luck.

Jeannie