Does anyone else have MGUS?

Mayo Clinic also partners with select medical facilities in other states who have met the high standards set by Mayo. I’m not sure if there is a clinic or hospital located in your state but here is a link to the map so you can possibly find a location near you. Mayo Clinic ... Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/members/map
Other options would be university hospitals or larger research hospitals. Are you near a larger city?

I'm searching for that now. My insurance has limits and the Mayo clinic isn't covered. I am hoping to find one locally.

Welcome to Connect! It’s so comforting to find someone who feels the same way, doesn’t it? Not having doctors take you seriously is so frustrating when you know something isn’t right. I was just going to echo @cheft and suggest having a second opinion, preferably at a larger teaching hospital like Mayo.
If you’d like to start the application process for a visit to one of Mayo’s 3 campuses, here’s the link to their home page. http://mayocl.in/1mtmR63
The coordinator who takes your call will take your information and guide you from there.

The doctors at Mayo work collaboratively between departments to get you the best treatment with hematologists, cardiologists, etc.. They take patient care very seriously.

You really need someone who specializes in blood disorders and it sounds like your current hematologist might not be up to the calling. Are there any other hematologist/oncologist you see can locally or a larger, teaching clinic nearby?

I am so glad to find and join this group. I have struggled with doctors not listening or caring about what is going on with me. I was originally diagnosed with Thalassemia in 2018 and after having a heart attack on 2/22/22 was sent back to the hematologist who originally diagnosed me. At an appointment in May 23, I asked for a summary of my appointment and it was there I discovered that I had been diagnosed with MGUS. When I asked my dr about it he said it was nothing to worry about as he said with the thalassemia. I have had trouble with Iron deficient anemia and have had 4 intervenous treatments for that in the past. The last one I had was in May this year and I am still fatigued and lethargic. I recently began to struggle with pain in my left hip. It started in May and has increased to the point where I had to leave a pilates class Friday. The pain is steady and upon standing my left leg and foot fall asleep and get tingly. I have had trouble with tingling in my hands and feet but was told there was nothing anyone could do. The drs never take me seriously and haven't provided any information about MGUS. I have discovered thru my research, which only consists of internet searches which scare the sh*& out of me, that my hip pain is a sign of progression. I have no idea what to do. I was even told by one cardiologist that I have Amyloidosis and then was told that wasn't it. HELP.....:) I have found some peace by searching through these post to discover we all have similar issues.

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

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.