About 20 years ago, I was diagnosed with MGUS. Once A year I traveled to a cancer hospital for blood work. Thank goodness no cancer but I did have some different health issues pop up such as, CIPD, possible Sjogren and Lupus. I also had Lyme Disease. I am now in my 80’s and my M spike is 0.4. Presently I have relocated and closer to larger facilities. I have several Doctors and my latest situation is kidney problems. I am not diabetic but my kidney biopsy said possible MGRS. I take several medications. I guess I am lucky in some ways but I am getting weaker and forgetful and tired.Just wanted to vent I guess.
About 20 years ago, I was diagnosed with MGUS. Once A year I traveled to a cancer hospital for blood work. Thank goodness no cancer but I did have some different health issues pop up such as, CIPD, possible Sjogren and Lupus. I also had Lyme Disease. I am now in my 80’s and my M spike is 0.4. Presently I have relocated and closer to larger facilities. I have several Doctors and my latest situation is kidney problems. I am not diabetic but my kidney biopsy said possible MGRS. I take several medications. I guess I am lucky in some ways but I am getting weaker and forgetful and tired.Just wanted to vent I guess.
@dede7
Vent away! Sometimes we just need to let it all out.
As I age, I am well aware of the ways that my body is betraying my somewhat youthful spirit. I hate it that I can’t seem to hold onto details such as names. I have entire conversations with people, hoping that they will toss me a memory bone and remind me who the heck they are. The cognitive decline is slow but insidious.
For those of us who carry more than one health burden it is hard to know which symptom is attributable to what disease, but unless aging is reversible, venting is a reasonable way to address it…as long as I can remember to whom I am venting.
Hugs.
Do you have a good support system to whom you can vent regularly?
@dede7
Vent away! Sometimes we just need to let it all out.
As I age, I am well aware of the ways that my body is betraying my somewhat youthful spirit. I hate it that I can’t seem to hold onto details such as names. I have entire conversations with people, hoping that they will toss me a memory bone and remind me who the heck they are. The cognitive decline is slow but insidious.
For those of us who carry more than one health burden it is hard to know which symptom is attributable to what disease, but unless aging is reversible, venting is a reasonable way to address it…as long as I can remember to whom I am venting.
Hugs.
Do you have a good support system to whom you can vent regularly?
I will start out telling you I am 93 and was diagnosed approximately 1 year ago with MCUS. I went with the testing etc. and then on my last visit I asked the Doctor why we were doing all this. He explained it was necessary to keep a check on this problem and maybe we could cut down the follow-up to once a year. I asked him why this was necessary since neither he or I could guarantee I would be here next year. He said I was right, and if I suddenly did not feel good, contact him for an appointment. That is what I am planning on doing. When you get to be my age, the number of new problems becomes terrifying, unless you decide that as long as you are standing, and you have no pain, forget about them and go on and have the best life you can.
Gina5009
I will start out telling you I am 93 and was diagnosed approximately 1 year ago with MCUS. I went with the testing etc. and then on my last visit I asked the Doctor why we were doing all this. He explained it was necessary to keep a check on this problem and maybe we could cut down the follow-up to once a year. I asked him why this was necessary since neither he or I could guarantee I would be here next year. He said I was right, and if I suddenly did not feel good, contact him for an appointment. That is what I am planning on doing. When you get to be my age, the number of new problems becomes terrifying, unless you decide that as long as you are standing, and you have no pain, forget about them and go on and have the best life you can.
Gina5009
I am so glad I looked this up on here, knowing I'm not crazy and my bones hurt! My Hemo claims there is no symptoms to MGUS. I don't agree, for years I have dealt with random bone pain I used to be able to ignore it, now it's getting worse I'm having to treat it with over-the-counter pain meds. Mainly it's my upper body shoulders, ribs upper back and arms. It's not joint pain and it's not muscle pain, it's pain in the middle of my bones to the point of wanting to just lay down and not move. Unfortunately, I am a single house income and have to work 2 jobs. I am able to, but some days are miserable, like today.
I am so glad I looked this up on here, knowing I'm not crazy and my bones hurt! My Hemo claims there is no symptoms to MGUS. I don't agree, for years I have dealt with random bone pain I used to be able to ignore it, now it's getting worse I'm having to treat it with over-the-counter pain meds. Mainly it's my upper body shoulders, ribs upper back and arms. It's not joint pain and it's not muscle pain, it's pain in the middle of my bones to the point of wanting to just lay down and not move. Unfortunately, I am a single house income and have to work 2 jobs. I am able to, but some days are miserable, like today.
Thanks for mentioning the bone pain that seems to radiate out from the middle of the bone. None of my doctors has sufficiently explained it. For me it’s worse at night. I take a couple of Motrin pm and get a bit of relief.
Hang in there. Paola
I was diagnosed about 2.5 years now and I have been doing urine and blood work since then. I have bone pain in my shine , foot, back and arm. My hematologist doesn't seem to think its an issue, but at nite when I sleep it makes it very hard. I was given some pain meds by another Dr because I have some other issues the meds was aiding with the pain in the back but nothing else l, however I decided to stop taking it because of the side effects I was having. November I go back for more testing and im hoping I can have him do some other testing other than urine and blood work. Hang in there trooper.
I am so glad I looked this up on here, knowing I'm not crazy and my bones hurt! My Hemo claims there is no symptoms to MGUS. I don't agree, for years I have dealt with random bone pain I used to be able to ignore it, now it's getting worse I'm having to treat it with over-the-counter pain meds. Mainly it's my upper body shoulders, ribs upper back and arms. It's not joint pain and it's not muscle pain, it's pain in the middle of my bones to the point of wanting to just lay down and not move. Unfortunately, I am a single house income and have to work 2 jobs. I am able to, but some days are miserable, like today.
@angiew
Ouch! I’m so sorry.
Is your hematologist/oncologist doing any scans of your bone structure? Mine does annual scans to look for any bone lesions. Fortunately I have none so far. I have some neuropathy in my feet and pain associated with that. I have intermittent pain in my shinbones which is here then gone until next time.
An orthopedist prescribed gabapentin which I did not find helpful and caused tingling in my fingertips. Otherwise Tylenol is minimally helpful.
Is your doc doing scans? If not, can you have a discussion about his or her reasoning?
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About 20 years ago, I was diagnosed with MGUS. Once A year I traveled to a cancer hospital for blood work. Thank goodness no cancer but I did have some different health issues pop up such as, CIPD, possible Sjogren and Lupus. I also had Lyme Disease. I am now in my 80’s and my M spike is 0.4. Presently I have relocated and closer to larger facilities. I have several Doctors and my latest situation is kidney problems. I am not diabetic but my kidney biopsy said possible MGRS. I take several medications. I guess I am lucky in some ways but I am getting weaker and forgetful and tired.Just wanted to vent I guess.
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5 Reactions@dede7
Vent away! Sometimes we just need to let it all out.
As I age, I am well aware of the ways that my body is betraying my somewhat youthful spirit. I hate it that I can’t seem to hold onto details such as names. I have entire conversations with people, hoping that they will toss me a memory bone and remind me who the heck they are. The cognitive decline is slow but insidious.
For those of us who carry more than one health burden it is hard to know which symptom is attributable to what disease, but unless aging is reversible, venting is a reasonable way to address it…as long as I can remember to whom I am venting.
Hugs.
Do you have a good support system to whom you can vent regularly?
-
Like -
Helpful -
Hug
4 ReactionsI will start out telling you I am 93 and was diagnosed approximately 1 year ago with MCUS. I went with the testing etc. and then on my last visit I asked the Doctor why we were doing all this. He explained it was necessary to keep a check on this problem and maybe we could cut down the follow-up to once a year. I asked him why this was necessary since neither he or I could guarantee I would be here next year. He said I was right, and if I suddenly did not feel good, contact him for an appointment. That is what I am planning on doing. When you get to be my age, the number of new problems becomes terrifying, unless you decide that as long as you are standing, and you have no pain, forget about them and go on and have the best life you can.
Gina5009
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11 Reactions@gina5009
I’m guessing that you are a breath of fresh air and your doc enjoys seeing you.
Thanks for the reminder about what is important.
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2 ReactionsI am so glad I looked this up on here, knowing I'm not crazy and my bones hurt! My Hemo claims there is no symptoms to MGUS. I don't agree, for years I have dealt with random bone pain I used to be able to ignore it, now it's getting worse I'm having to treat it with over-the-counter pain meds. Mainly it's my upper body shoulders, ribs upper back and arms. It's not joint pain and it's not muscle pain, it's pain in the middle of my bones to the point of wanting to just lay down and not move. Unfortunately, I am a single house income and have to work 2 jobs. I am able to, but some days are miserable, like today.
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Helpful -
Hug
7 ReactionsThanks for mentioning the bone pain that seems to radiate out from the middle of the bone. None of my doctors has sufficiently explained it. For me it’s worse at night. I take a couple of Motrin pm and get a bit of relief.
Hang in there. Paola
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Helpful -
Hug
7 ReactionsI was diagnosed about 2.5 years now and I have been doing urine and blood work since then. I have bone pain in my shine , foot, back and arm. My hematologist doesn't seem to think its an issue, but at nite when I sleep it makes it very hard. I was given some pain meds by another Dr because I have some other issues the meds was aiding with the pain in the back but nothing else l, however I decided to stop taking it because of the side effects I was having. November I go back for more testing and im hoping I can have him do some other testing other than urine and blood work. Hang in there trooper.
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Hug
3 Reactionsyes, there can be bone changes with MGUS
https://pmc.ncbi.nlm.nih.gov/articles/PMC5745135/
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4 Reactions@angiew
Ouch! I’m so sorry.
Is your hematologist/oncologist doing any scans of your bone structure? Mine does annual scans to look for any bone lesions. Fortunately I have none so far. I have some neuropathy in my feet and pain associated with that. I have intermittent pain in my shinbones which is here then gone until next time.
An orthopedist prescribed gabapentin which I did not find helpful and caused tingling in my fingertips. Otherwise Tylenol is minimally helpful.
Is your doc doing scans? If not, can you have a discussion about his or her reasoning?
-
Like -
Helpful -
Hug
3 Reactions