@suzye How are you doing? How is your MGUS and osteoporosis situations affecting your everyday life? Do you have any tips for us in changing diet or the way we advocate for our own health, please?
Ginger
Do any of you with mgus have issues with feeling sick with colds, sinus, etc. often? And taking antibiotics often? I was just diagnosed with this and not given any information on what to do. I rarely feel really well....I am 83, and am scared of this diagnosis.....am tired a lot too.
Do any of you with mgus have issues with feeling sick with colds, sinus, etc. often? And taking antibiotics often? I was just diagnosed with this and not given any information on what to do. I rarely feel really well....I am 83, and am scared of this diagnosis.....am tired a lot too.
You should ask the doctor you trust with this question, or see an oncologist and ask. MGUS does not usually cause these kinds of issues from my understanding because it does not prevent bone marrow from creating the correct cells. That being said, there might be something else underlying with it that is causing your immune system to be off. There are other things that could be happening as well. I met someone who was told they had MGUS, turned out to be something else entirely and of a more immediate nature. There are so many things besides this that could affect your immune system, but because you have this diagnosis, it pays to be especially careful and double check all the boxes.
@dazlin Checking in with you to hear about your bone density scan results, if you care to share. I hate to be so silly here, but what do you do to make bone broth? Will any type of bone do? I am always interested in more natural styles of remedies, rather than chemicals, when possible!
Ginger
@ginger, so sorry I didn't see your post. Seems I'm not getting notifications. I'll fix that🙂. For bone broth, there are many recipes online. The way I do it, is with beef marrow bones I buy at my local supermarket, meat dept. Grass fed are best, but I've not found them. So I first broil the bones on lined cookie sheet, seasoned with pepper/salt. This melts out plenty of the fat, and adds nice flavor. I then boil them in a HUGE stock pot, with a splash of apple cider vinegar(important)
Once a full boil comes, lower to a very low simmer for a minimum of 36 hours. I leave it on overnight. Added benefits I do are a bunch of fresh parsley, 2 cloves of garlic. It's very long process...when it's all done...cool, chill in fridge, then skim off all fat. I add some tumerick and fresh ground black pepper (catalist for tumerick). I separate batches and freeze. You can add this to your recipes or enjoy a warmed cup full.
I haven't made it in a while, but I'm eating my spinach, broccoli etc. I also have not sceduled a bone density test yet. I had to have a bone marrow test done in June because my bloodwork shows some concerns. No excuse for not taking a bone density, just alot on my plate for now, and family issues. I'll be seeing my oncologist again late October. Check online for bone broth recipes 🙂
Hi - 49 year old male here in chronic pain for 7 months now, just recently diagnosed with MGUS and Osteoporosis in lower two vertebrae. Six months ago I had a ct-scan that revealed enough of a problem to warrant 2 prescriptions on spot: Dilaudid for the pain and Lyrica for what was diagnosed as symptoms related to nerve damage. I take the Dilaudid as needed, sometimes as much as 8mg a day, and am taking 4x75mg of Lyrica daily. Today, I was given Fosamax and the Calcium/Vitamin D everyone here knows too well. I'm currently on a waiting list for an MRI which I'm told should be further revealing. My hematologist today told me that he'd never seen such an advanced case of osteoporosis in a 49-year old male... someone who, despite being lactose intolerant, still enjoys milk, yogurt and dairy products. Clearly, something is preventing Calcium and Vitamin D from being properly absorbed into my body. (My guess). I'm wondering if there is anyone else out there, in my age range, dealing with what my hematologist described as "the lower spine of a 75-80 year old woman".
What can cause this in someone of my age? Any research or ideas or experiencers out there with some insight? Bless -
Do any of you with mgus have issues with feeling sick with colds, sinus, etc. often? And taking antibiotics often? I was just diagnosed with this and not given any information on what to do. I rarely feel really well....I am 83, and am scared of this diagnosis.....am tired a lot too.
Low grade fevers too. The thing is, unless you have an actual diagnosed infection, you shouldn't be taking antibiotics. That means that even if you have symptoms like the ones you described, your doctor should not be prescribing you endless rounds of antibiotics for what are likely small infections that your system is likely capable of fighting off on its own. Also, if when you take antibiotics you are not limiting your sugar intake, consuming large amounts of probiotics (yogurt), you are killing off the good bacteria in your gut and not replacing it. And then, like me some fifteen years ago, you wind up with a systemic yeast infection, thrush, and the inability to consume solid foods for more than three months. Trust me auntieoakley, you don't want to go there. Be careful. Best of luck to you!
Hi - 49 year old male here in chronic pain for 7 months now, just recently diagnosed with MGUS and Osteoporosis in lower two vertebrae. Six months ago I had a ct-scan that revealed enough of a problem to warrant 2 prescriptions on spot: Dilaudid for the pain and Lyrica for what was diagnosed as symptoms related to nerve damage. I take the Dilaudid as needed, sometimes as much as 8mg a day, and am taking 4x75mg of Lyrica daily. Today, I was given Fosamax and the Calcium/Vitamin D everyone here knows too well. I'm currently on a waiting list for an MRI which I'm told should be further revealing. My hematologist today told me that he'd never seen such an advanced case of osteoporosis in a 49-year old male... someone who, despite being lactose intolerant, still enjoys milk, yogurt and dairy products. Clearly, something is preventing Calcium and Vitamin D from being properly absorbed into my body. (My guess). I'm wondering if there is anyone else out there, in my age range, dealing with what my hematologist described as "the lower spine of a 75-80 year old woman".
What can cause this in someone of my age? Any research or ideas or experiencers out there with some insight? Bless -
HI-I am the primary caregiver for my wife who has similar issues. Did your doctors tell you much about MGUS? It's the precursor for Multiple Myeloma. Both start when your marrow creates abnormal protein cells that overpopulate the bone marrow space. In the process they leach calcium out of the bones that enters the blood supply causing downstream issues while weakening bones.
My wife had L1 repaired by kyphoplasty last summer. She also had fractures of T7 & T8 that were mending themselves and weren't repaired by surgery. I'm not a medical professional, but have learned a lot about MGUS/MM. You are fortunate you found your issues as early as you did as MM is a silent disease. In hindsight my wife had unexplained leg fractures 3 plus years ago. We just attributed them to age and having a job requiring lots of lifting. Between the leg and spine fractures she also had several rib fractures. Our picture was slow to evolve into an actual diagnosis. In fact we diagnosed her before the doctors did. Most importantly for you, if you've not had recent blood and urine tests, you need to have them. Assuming I'm on the right track, you'll eventually have genetic testing too. All 3 parts were needed for us to get our confirmed MM diagnosis (imaging, labs and genetics).
A good source for MGUS/MM info is the Multiple Myeloma Research Foundation (MMRF). Good luck with your investigation. There are several good relatively recent therapies to slow disease progression.
Your hematologist should have a network for you to consult and treat with, if/when necessary. MGUS is sometimes only watched and not immediately treated. Although my wife has full blown MM that had to be dealt with post haste.
Regards
HI-I am the primary caregiver for my wife who has similar issues. Did your doctors tell you much about MGUS? It's the precursor for Multiple Myeloma. Both start when your marrow creates abnormal protein cells that overpopulate the bone marrow space. In the process they leach calcium out of the bones that enters the blood supply causing downstream issues while weakening bones.
My wife had L1 repaired by kyphoplasty last summer. She also had fractures of T7 & T8 that were mending themselves and weren't repaired by surgery. I'm not a medical professional, but have learned a lot about MGUS/MM. You are fortunate you found your issues as early as you did as MM is a silent disease. In hindsight my wife had unexplained leg fractures 3 plus years ago. We just attributed them to age and having a job requiring lots of lifting. Between the leg and spine fractures she also had several rib fractures. Our picture was slow to evolve into an actual diagnosis. In fact we diagnosed her before the doctors did. Most importantly for you, if you've not had recent blood and urine tests, you need to have them. Assuming I'm on the right track, you'll eventually have genetic testing too. All 3 parts were needed for us to get our confirmed MM diagnosis (imaging, labs and genetics).
A good source for MGUS/MM info is the Multiple Myeloma Research Foundation (MMRF). Good luck with your investigation. There are several good relatively recent therapies to slow disease progression.
Your hematologist should have a network for you to consult and treat with, if/when necessary. MGUS is sometimes only watched and not immediately treated. Although my wife has full blown MM that had to be dealt with post haste.
Regards
Thank you for the information. The ball is already starting to roll getting my ancestry and my background check just in case of future issues that I might not knowing that I'm going to have. I don't have insurance like my husband and my daughter but I do have a doctor and I go see him in 2 days to go get blood work done and to try to figure out what's going on. So you're right I'm heading in the right direction. Thank you. And I'm so sorry about your wife. I couldn't imagine brittle wanting to live a good and fulfilling life. But she will medical advances are increasing every day. Let's hope for the best
Low grade fevers too. The thing is, unless you have an actual diagnosed infection, you shouldn't be taking antibiotics. That means that even if you have symptoms like the ones you described, your doctor should not be prescribing you endless rounds of antibiotics for what are likely small infections that your system is likely capable of fighting off on its own. Also, if when you take antibiotics you are not limiting your sugar intake, consuming large amounts of probiotics (yogurt), you are killing off the good bacteria in your gut and not replacing it. And then, like me some fifteen years ago, you wind up with a systemic yeast infection, thrush, and the inability to consume solid foods for more than three months. Trust me auntieoakley, you don't want to go there. Be careful. Best of luck to you!
Not a doctor but have you been anywhere exotically or an island or out of country? If so recently in the past year or two I would have myself checked out for parasites. But that's me I travel a lot so I would have to get myself checked. I'm not trying to scare you. At least you can knock it out
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@suzye How are you doing? How is your MGUS and osteoporosis situations affecting your everyday life? Do you have any tips for us in changing diet or the way we advocate for our own health, please?
Ginger
-
Like -
Helpful -
Hug
1 ReactionDo any of you with mgus have issues with feeling sick with colds, sinus, etc. often? And taking antibiotics often? I was just diagnosed with this and not given any information on what to do. I rarely feel really well....I am 83, and am scared of this diagnosis.....am tired a lot too.
-
Like -
Helpful -
Hug
1 ReactionYou should ask the doctor you trust with this question, or see an oncologist and ask. MGUS does not usually cause these kinds of issues from my understanding because it does not prevent bone marrow from creating the correct cells. That being said, there might be something else underlying with it that is causing your immune system to be off. There are other things that could be happening as well. I met someone who was told they had MGUS, turned out to be something else entirely and of a more immediate nature. There are so many things besides this that could affect your immune system, but because you have this diagnosis, it pays to be especially careful and double check all the boxes.
-
Like -
Helpful -
Hug
2 ReactionsThank you very much.....I need second opinion.
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Helpful -
Hug
2 Reactions@ginger, so sorry I didn't see your post. Seems I'm not getting notifications. I'll fix that🙂. For bone broth, there are many recipes online. The way I do it, is with beef marrow bones I buy at my local supermarket, meat dept. Grass fed are best, but I've not found them. So I first broil the bones on lined cookie sheet, seasoned with pepper/salt. This melts out plenty of the fat, and adds nice flavor. I then boil them in a HUGE stock pot, with a splash of apple cider vinegar(important)
Once a full boil comes, lower to a very low simmer for a minimum of 36 hours. I leave it on overnight. Added benefits I do are a bunch of fresh parsley, 2 cloves of garlic. It's very long process...when it's all done...cool, chill in fridge, then skim off all fat. I add some tumerick and fresh ground black pepper (catalist for tumerick). I separate batches and freeze. You can add this to your recipes or enjoy a warmed cup full.
I haven't made it in a while, but I'm eating my spinach, broccoli etc. I also have not sceduled a bone density test yet. I had to have a bone marrow test done in June because my bloodwork shows some concerns. No excuse for not taking a bone density, just alot on my plate for now, and family issues. I'll be seeing my oncologist again late October. Check online for bone broth recipes 🙂
-
Like -
Helpful -
Hug
3 ReactionsHi - 49 year old male here in chronic pain for 7 months now, just recently diagnosed with MGUS and Osteoporosis in lower two vertebrae. Six months ago I had a ct-scan that revealed enough of a problem to warrant 2 prescriptions on spot: Dilaudid for the pain and Lyrica for what was diagnosed as symptoms related to nerve damage. I take the Dilaudid as needed, sometimes as much as 8mg a day, and am taking 4x75mg of Lyrica daily. Today, I was given Fosamax and the Calcium/Vitamin D everyone here knows too well. I'm currently on a waiting list for an MRI which I'm told should be further revealing. My hematologist today told me that he'd never seen such an advanced case of osteoporosis in a 49-year old male... someone who, despite being lactose intolerant, still enjoys milk, yogurt and dairy products. Clearly, something is preventing Calcium and Vitamin D from being properly absorbed into my body. (My guess). I'm wondering if there is anyone else out there, in my age range, dealing with what my hematologist described as "the lower spine of a 75-80 year old woman".
What can cause this in someone of my age? Any research or ideas or experiencers out there with some insight? Bless -
Low grade fevers too. The thing is, unless you have an actual diagnosed infection, you shouldn't be taking antibiotics. That means that even if you have symptoms like the ones you described, your doctor should not be prescribing you endless rounds of antibiotics for what are likely small infections that your system is likely capable of fighting off on its own. Also, if when you take antibiotics you are not limiting your sugar intake, consuming large amounts of probiotics (yogurt), you are killing off the good bacteria in your gut and not replacing it. And then, like me some fifteen years ago, you wind up with a systemic yeast infection, thrush, and the inability to consume solid foods for more than three months. Trust me auntieoakley, you don't want to go there. Be careful. Best of luck to you!
HI-I am the primary caregiver for my wife who has similar issues. Did your doctors tell you much about MGUS? It's the precursor for Multiple Myeloma. Both start when your marrow creates abnormal protein cells that overpopulate the bone marrow space. In the process they leach calcium out of the bones that enters the blood supply causing downstream issues while weakening bones.
My wife had L1 repaired by kyphoplasty last summer. She also had fractures of T7 & T8 that were mending themselves and weren't repaired by surgery. I'm not a medical professional, but have learned a lot about MGUS/MM. You are fortunate you found your issues as early as you did as MM is a silent disease. In hindsight my wife had unexplained leg fractures 3 plus years ago. We just attributed them to age and having a job requiring lots of lifting. Between the leg and spine fractures she also had several rib fractures. Our picture was slow to evolve into an actual diagnosis. In fact we diagnosed her before the doctors did. Most importantly for you, if you've not had recent blood and urine tests, you need to have them. Assuming I'm on the right track, you'll eventually have genetic testing too. All 3 parts were needed for us to get our confirmed MM diagnosis (imaging, labs and genetics).
A good source for MGUS/MM info is the Multiple Myeloma Research Foundation (MMRF). Good luck with your investigation. There are several good relatively recent therapies to slow disease progression.
Your hematologist should have a network for you to consult and treat with, if/when necessary. MGUS is sometimes only watched and not immediately treated. Although my wife has full blown MM that had to be dealt with post haste.
Regards
-
Like -
Helpful -
Hug
2 ReactionsThank you for the information. The ball is already starting to roll getting my ancestry and my background check just in case of future issues that I might not knowing that I'm going to have. I don't have insurance like my husband and my daughter but I do have a doctor and I go see him in 2 days to go get blood work done and to try to figure out what's going on. So you're right I'm heading in the right direction. Thank you. And I'm so sorry about your wife. I couldn't imagine brittle wanting to live a good and fulfilling life. But she will medical advances are increasing every day. Let's hope for the best
Not a doctor but have you been anywhere exotically or an island or out of country? If so recently in the past year or two I would have myself checked out for parasites. But that's me I travel a lot so I would have to get myself checked. I'm not trying to scare you. At least you can knock it out