Does anyone else have MGUS?

Had MGUS for 15 years. Five years ago became multiple myeloma.

Had MGUS for 15 years. Five years ago became multiple myeloma.

I pray you are doing well with your treatment. I was diagnosed with MGUS a year ago, but I suspect I've had it a few years before diagnosis. When you had MGUS, did you ever experience a feeling of wooziness? Not dizziness. It's a feeling like I'm drunk! Worst when I stand (it is not my blood pressure), better when I sit down, and goes away completely when I lie down. It sounds positional of course. I have an appt with my ear nose throat doc at the end of August (took 4 months to get in to him!). Hematologist doesn't think it's from MGUS, but I wonder. I've seen a neurologist/neurosurgeon, endocrinologist, and of course, my PCP. No one can figure out the cause so far, and it has become debilitating.

Is that unusual to only have neuropathy in 1 foot?
I’m starting to get a little tingling in my hands as well.
🥺

Thank you for sharing. I think I saw in another comment that you take Qunol turmeric enhanced with black pepper and I have been taking this same one on and off for a year but only 2 capsules a day so I will try a higher dose. Please keep us posted how and if the turmeric affects your lab results. I am thankful for this resource to be able to connect with those who may be walking in my shoes and I lift you all up in prayer that together we can find some answers.

Please forgive spelling mistakes. My wife and I did decide to go to the Mayo in Rochester MN for a second opinion. I seen David Dingli, M.D., Ph.D. He recieved all my previous records from Dexa Scans, MRI's, Labs, Slides from the two previous bone marrow biopsy's etc. ahead of the visit. They request all of that so they can review and be prepared for your visit. I had my initial appointment and Dr. Dingli was very prepared and very nice. He reviewed my history with us to ensure he had everything correct. He then proceded to talk to us. He did state that his initial review of my slides form the biopsy's according to him did not show me in the Smoldering catigory. He was having his experts review them and would a finial synopsis. He then went on to explain he did not like the term "smoldering myloma" and even though that diagnosis came from they Mayo, there has been alot of discussion around it and if it should even be used. He then went on to explain his resoning. he drew a chart and listed 5 different things they look at to determine severity of this illness.
1. How big are the protiens/plsma cells - below 1.5 is good - above 1.5 is bad - mine was good
2. What type - IqG is good - not IqG is bad - mine was good
3. What else - IgA or IgM none is good - above is bad - mine was good
4. Light Chains - none is good - above none is bad - mine was bad
Plasma cells absent is good - Present is bad - mine was absent - this means, were plasma cells attacking my heart, lungs, kedneys, liver. They ran a fat asperation test, a EKG and an ECHO Cardiogram and all was well.
PLASMA CELL ASSESSMENT, B -No monotypic plasma cells = good

They also ran more labs and a 24 hour urin test. My protein in my urin was high but that was expecded but my kidney function is really good. he said my heart was great. no issues with lungs.
So I had 4 good things going for me and one bad being my light chains. - He said Smoldering Myloma diagnosis only looks at light chains and if effected marrow is 10% or above and doesn't factor in all the other thing I listed. That's why he doesn't like that diagnosis.

Sooooo - with all of that and a new review of my slides, he moved me back to MGUS diagnosis. he stated my original biopsy done end of 2001 according to his team was between o to 5% effected marrow and the one done this past April was 5%-7%. My team at Virginia Piper Cancer center at Abbott NW in Minneapolis had my last one at or above 10%.
We booked a hotel for the week at the Mayo not knowing what all they would have me do. We were able to leave earlier than planned as they finished everything and just waited for some of the final results to come back. He called me one afternoon while still there and gave updates to us as some test results came in and it ended up being good news. He then followed up about a week after when everything was final and all testing etc. was reviewed by him and his team again and gave me a final update and review. Everything was positive and basically said I'm looking in good shape. He stated with my condition, evidence shows I will likely progress at a rate of 1% a year and that's not compounded. that's 1%. And effected bone morrow typically does not turn to full myloma till over 60% is effected and shows organ damage. so basically if all goes well, I will likely die of something completely unrelated to this. I'll be 54 this year.
As far as he is concerned I go back to getting labs dom=ne every 4-6 months and barring any big changes, I keep living my life. Probably need to eat better and drink less Bourbon but I'm trying. 😊
I know this is not how it goes for everyone and hope it stays true for me as this has been very taxing for both me and my wife. I wish you and everyone the very best as this can be very scary. Obviously my wife and I are very happy we decided to get a second opinion and honestly IMO, the Mayo are the experts.
I'm sure I left something out but please don't feel bad for reching out. I still like to follow the chats and see where everyone else is and will continue to give updates.

As for the Curcumin results. I did not get another Biopsy at the Mayo visit as he seen no reason to do that. I will share some labs as far as the Light Chains go.
Now, I am no doctor and and I cannot say if the Curcumin and Omega Oils is the reson for the decrease in my Light Chains, but I'm going to keep taking them. All three show a drop.

See the attachments.
Dr. Dingli at the Mayo had no issues with me continuing taking my dosage.

Please forgive spelling mistakes. My wife and I did decide to go to the Mayo in Rochester MN for a second opinion. I seen David Dingli, M.D., Ph.D. He recieved all my previous records from Dexa Scans, MRI's, Labs, Slides from the two previous bone marrow biopsy's etc. ahead of the visit. They request all of that so they can review and be prepared for your visit. I had my initial appointment and Dr. Dingli was very prepared and very nice. He reviewed my history with us to ensure he had everything correct. He then proceded to talk to us. He did state that his initial review of my slides form the biopsy's according to him did not show me in the Smoldering catigory. He was having his experts review them and would a finial synopsis. He then went on to explain he did not like the term "smoldering myloma" and even though that diagnosis came from they Mayo, there has been alot of discussion around it and if it should even be used. He then went on to explain his resoning. he drew a chart and listed 5 different things they look at to determine severity of this illness.
1. How big are the protiens/plsma cells - below 1.5 is good - above 1.5 is bad - mine was good
2. What type - IqG is good - not IqG is bad - mine was good
3. What else - IgA or IgM none is good - above is bad - mine was good
4. Light Chains - none is good - above none is bad - mine was bad
Plasma cells absent is good - Present is bad - mine was absent - this means, were plasma cells attacking my heart, lungs, kedneys, liver. They ran a fat asperation test, a EKG and an ECHO Cardiogram and all was well.
PLASMA CELL ASSESSMENT, B -No monotypic plasma cells = good

They also ran more labs and a 24 hour urin test. My protein in my urin was high but that was expecded but my kidney function is really good. he said my heart was great. no issues with lungs.
So I had 4 good things going for me and one bad being my light chains. - He said Smoldering Myloma diagnosis only looks at light chains and if effected marrow is 10% or above and doesn't factor in all the other thing I listed. That's why he doesn't like that diagnosis.

Sooooo - with all of that and a new review of my slides, he moved me back to MGUS diagnosis. he stated my original biopsy done end of 2001 according to his team was between o to 5% effected marrow and the one done this past April was 5%-7%. My team at Virginia Piper Cancer center at Abbott NW in Minneapolis had my last one at or above 10%.
We booked a hotel for the week at the Mayo not knowing what all they would have me do. We were able to leave earlier than planned as they finished everything and just waited for some of the final results to come back. He called me one afternoon while still there and gave updates to us as some test results came in and it ended up being good news. He then followed up about a week after when everything was final and all testing etc. was reviewed by him and his team again and gave me a final update and review. Everything was positive and basically said I'm looking in good shape. He stated with my condition, evidence shows I will likely progress at a rate of 1% a year and that's not compounded. that's 1%. And effected bone morrow typically does not turn to full myloma till over 60% is effected and shows organ damage. so basically if all goes well, I will likely die of something completely unrelated to this. I'll be 54 this year.
As far as he is concerned I go back to getting labs dom=ne every 4-6 months and barring any big changes, I keep living my life. Probably need to eat better and drink less Bourbon but I'm trying. 😊
I know this is not how it goes for everyone and hope it stays true for me as this has been very taxing for both me and my wife. I wish you and everyone the very best as this can be very scary. Obviously my wife and I are very happy we decided to get a second opinion and honestly IMO, the Mayo are the experts.
I'm sure I left something out but please don't feel bad for reching out. I still like to follow the chats and see where everyone else is and will continue to give updates.

As for the Curcumin results. I did not get another Biopsy at the Mayo visit as he seen no reason to do that. I will share some labs as far as the Light Chains go.
Now, I am no doctor and and I cannot say if the Curcumin and Omega Oils is the reson for the decrease in my Light Chains, but I'm going to keep taking them. All three show a drop.

See the attachments.
Dr. Dingli at the Mayo had no issues with me continuing taking my dosage.

Thank you so much for posting your test results. They are similar to mine. It helps to know I'm not losing my mind!