@chawkins
Welcome to Mayo Clinic Connect. It looks like you have a great regimen set up for yourself. Eating healthy and exercise is bound to be better for all of us.
How was your MGUS discovered? For many of us it was happenstance.
My MGUS was discovered when I began to feel mild tingling in both feet. My PCP wanted to monitor and within a year I began to have tingling in both hands. Dr referred me to a neurologist and after blood tests, the SPEP showed positive for MProtein.
I was diagnosed with MGUS in 2015. Low protein level but has increased .1 each year since. I also have osteoporosis in lower spine (L5 area) and mild neuropathy. I had a PET scan (negative for tumors, etc) but my bone marrow biopsy determined I have MGUS. Lamda/Kappa Light chain ratio is high and Kappa Light Chain level is high. I have also been diligent with VitD/VitK and B12, Calcium, along with other needed supplements for 8 years. I consistently exercise (resistance and cardio) 5xWeek, eat very healthy. No seed oils, preservatives, follow the "clean 15 & dirty dozen" recommendation. I figured if my MGUS progresses in the near to late future, I want my body to be as healthy as possibly both physically and mentally.
Good morning @chawkins.. can I ask how often you have had a bone density scan for osteoporosis and if your protocol of supplements and exercise has halted or improved the osteoporosis. I also have MGUS (altho the only markers affected right now are high IGM and low IGA and IGG-no light chain involvement) and was diagnosed 2 years ago with osteoporosis in my spine. I am super sensitive to medicines and refused prescriptive treatment for the osteoporosis despite the ranting and raving of the rheumatologist. I am 70 years old and have always exercised, take the same supplements you mentioned and have always followed a 70% plant based clean diet so I suspect my lack of estrogen and progesterone (basically NONE at my last blood work a few years ago) is causing the osteoporosis. Any other ladies on the forum started bio-identical hormone therapy this late in life and able to tolerate it without side effects?
Good morning @chawkins.. can I ask how often you have had a bone density scan for osteoporosis and if your protocol of supplements and exercise has halted or improved the osteoporosis. I also have MGUS (altho the only markers affected right now are high IGM and low IGA and IGG-no light chain involvement) and was diagnosed 2 years ago with osteoporosis in my spine. I am super sensitive to medicines and refused prescriptive treatment for the osteoporosis despite the ranting and raving of the rheumatologist. I am 70 years old and have always exercised, take the same supplements you mentioned and have always followed a 70% plant based clean diet so I suspect my lack of estrogen and progesterone (basically NONE at my last blood work a few years ago) is causing the osteoporosis. Any other ladies on the forum started bio-identical hormone therapy this late in life and able to tolerate it without side effects?
Would you mind sharing your DEXA scores? I am 73 and my osteoporosis worsened quite a bit in the last two years and I'm trying to decide about which meds to take for it. Thanks.
Good morning @chawkins.. can I ask how often you have had a bone density scan for osteoporosis and if your protocol of supplements and exercise has halted or improved the osteoporosis. I also have MGUS (altho the only markers affected right now are high IGM and low IGA and IGG-no light chain involvement) and was diagnosed 2 years ago with osteoporosis in my spine. I am super sensitive to medicines and refused prescriptive treatment for the osteoporosis despite the ranting and raving of the rheumatologist. I am 70 years old and have always exercised, take the same supplements you mentioned and have always followed a 70% plant based clean diet so I suspect my lack of estrogen and progesterone (basically NONE at my last blood work a few years ago) is causing the osteoporosis. Any other ladies on the forum started bio-identical hormone therapy this late in life and able to tolerate it without side effects?
Hi @1oldsoul
I've had bone density scans for 20 years (every two years as recommended) I've had osteopenia for 15 years and since I was diagnosed with MGUS 9 years ago, I've had osteoporosis within the last 4 years. My Dr (hematologist/oncologist) told me that "MGUS is a known association with osteoporosis". The best I can do is continue strength training/cardio/walking, continue my annual lab.
I do eat a healthy balanced diet of meat(grass fed), chicken(pasture raised), salmon(not farm raised), veggies, and good fats.
I also started taking 5mg/day of Creatine (brand Thorne). There has been significant research benefiting bone health. My hope is my bone scan next year may show positive results!!
Would you mind sharing your DEXA scores? I am 73 and my osteoporosis worsened quite a bit in the last two years and I'm trying to decide about which meds to take for it. Thanks.
Hi @ripley , I am not quite sure how to read the results since it doesn’t mention DEXA and this format looks different than the last one but here is what it says for spine:
Young Ref (%) 83.9, T-score -1.10, Age match (%) 97.5, Z-score -0.14. I had to make an appointment with my doc just to get it interpreted! (Unlike the prior one I had done in another state.) As I was just reviewing it, it does show osteoporosis in the hip as well:
Young Ref (%) 73.4, T-score -2.24, Age match (%) 98.4, Z-score -0.10. The graph shows high medium risk for fractures in hip and low medium risk for fractures in spine. Not good news since I walk 3+ miles every day…but then I recently found out that walking doesn’t really help prevent osteoporosis-that weight bearing exercises is what is necessary. I recently started a supplement called Ostinol 450 that was recommended by a naturopathic doc so we’ll see if there is any benefit next year when I have my next bone density. I do believe the MGUS plays a part in osteoporosis.
Hi @1oldsoul
I've had bone density scans for 20 years (every two years as recommended) I've had osteopenia for 15 years and since I was diagnosed with MGUS 9 years ago, I've had osteoporosis within the last 4 years. My Dr (hematologist/oncologist) told me that "MGUS is a known association with osteoporosis". The best I can do is continue strength training/cardio/walking, continue my annual lab.
I do eat a healthy balanced diet of meat(grass fed), chicken(pasture raised), salmon(not farm raised), veggies, and good fats.
I also started taking 5mg/day of Creatine (brand Thorne). There has been significant research benefiting bone health. My hope is my bone scan next year may show positive results!!
Did you mean 5 grams of Creatine rather than 5 mg? Do you have links to any research you could share with us? Are you taking any of the osteoporosis drugs? Or have you ever tried them? I am too frightened to try them since I get side effects from just about all drugs.
Did you mean 5 grams of Creatine rather than 5 mg? Do you have links to any research you could share with us? Are you taking any of the osteoporosis drugs? Or have you ever tried them? I am too frightened to try them since I get side effects from just about all drugs.
Would you mind sharing your DEXA scores? I am 73 and my osteoporosis worsened quite a bit in the last two years and I'm trying to decide about which meds to take for it. Thanks.
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@chawkins
Welcome to Mayo Clinic Connect. It looks like you have a great regimen set up for yourself. Eating healthy and exercise is bound to be better for all of us.
How was your MGUS discovered? For many of us it was happenstance.
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1 ReactionMy MGUS was discovered when I began to feel mild tingling in both feet. My PCP wanted to monitor and within a year I began to have tingling in both hands. Dr referred me to a neurologist and after blood tests, the SPEP showed positive for MProtein.
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Helpful -
Hug
1 ReactionGood morning @chawkins.. can I ask how often you have had a bone density scan for osteoporosis and if your protocol of supplements and exercise has halted or improved the osteoporosis. I also have MGUS (altho the only markers affected right now are high IGM and low IGA and IGG-no light chain involvement) and was diagnosed 2 years ago with osteoporosis in my spine. I am super sensitive to medicines and refused prescriptive treatment for the osteoporosis despite the ranting and raving of the rheumatologist. I am 70 years old and have always exercised, take the same supplements you mentioned and have always followed a 70% plant based clean diet so I suspect my lack of estrogen and progesterone (basically NONE at my last blood work a few years ago) is causing the osteoporosis. Any other ladies on the forum started bio-identical hormone therapy this late in life and able to tolerate it without side effects?
Would you mind sharing your DEXA scores? I am 73 and my osteoporosis worsened quite a bit in the last two years and I'm trying to decide about which meds to take for it. Thanks.
Hi @1oldsoul
I've had bone density scans for 20 years (every two years as recommended) I've had osteopenia for 15 years and since I was diagnosed with MGUS 9 years ago, I've had osteoporosis within the last 4 years. My Dr (hematologist/oncologist) told me that "MGUS is a known association with osteoporosis". The best I can do is continue strength training/cardio/walking, continue my annual lab.
I do eat a healthy balanced diet of meat(grass fed), chicken(pasture raised), salmon(not farm raised), veggies, and good fats.
I also started taking 5mg/day of Creatine (brand Thorne). There has been significant research benefiting bone health. My hope is my bone scan next year may show positive results!!
Hi @ripley , I am not quite sure how to read the results since it doesn’t mention DEXA and this format looks different than the last one but here is what it says for spine:
Young Ref (%) 83.9, T-score -1.10, Age match (%) 97.5, Z-score -0.14. I had to make an appointment with my doc just to get it interpreted! (Unlike the prior one I had done in another state.) As I was just reviewing it, it does show osteoporosis in the hip as well:
Young Ref (%) 73.4, T-score -2.24, Age match (%) 98.4, Z-score -0.10. The graph shows high medium risk for fractures in hip and low medium risk for fractures in spine. Not good news since I walk 3+ miles every day…but then I recently found out that walking doesn’t really help prevent osteoporosis-that weight bearing exercises is what is necessary. I recently started a supplement called Ostinol 450 that was recommended by a naturopathic doc so we’ll see if there is any benefit next year when I have my next bone density. I do believe the MGUS plays a part in osteoporosis.
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1 ReactionDid you mean 5 grams of Creatine rather than 5 mg? Do you have links to any research you could share with us? Are you taking any of the osteoporosis drugs? Or have you ever tried them? I am too frightened to try them since I get side effects from just about all drugs.
I’m so sorry, yes 5g of Creatine not 5mg!!
I am not taking any of the osteoporosis meds. On top of my other supplements, I am also taking Perque Bone Guard Forte’.
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1 Reaction@1oldsoul
Hi, apparently since I’m a new member to this blog I cannot share any links !!! A message said for me to try back in a few days.
@1oldsoul
L1-L-4: TScore -3.6
L1-L-4: ZScore -2.1
Total Hip TScore: -2.5
Total Hop ZScore: -1.5
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