I'm curious about two things.
1) What was your original presentation that caused your health care providers to test you for a monoclonal gammopathy?
2) Did they ever find the cause of whatever your original presentation was?
So, for example, many of us are tested because we have peripheral neuropathy. In my case, they discovered nerve root impingement in the lumbar area and overall degenerative disk disease.
However, there's still no understanding of why I get sick so often. In the past two months, I've been sick three times: ear infection (fungal); a week of severe diarrhea; and now the flu ... or I suspect hand / foot / mouth disease, as I've had it before.
Anyway, I'm just curious as how other MGUSers are doing with their original issues. I'd like to not get sick so often, but I don't know what else I need to do to be healthier. I can do some physical therapy exercises that help with the neuropathy and pain, so that's good.
I'd love to hear from all of you!
Forums
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Why were you tested for MGUS?
I was tested in an attempt to find the cause of my polyneuropathies. I now know I have bilateral carpal tunnel, impingement of bones on nerves and degenerative disk disease, inflammatory arthritis, and diabetic neuropahy. But I still don't know what is causing my neuropathic problems in my face and other places not effected by the previous causes. It is frustrating!
I have had pneumonia and on and off diarrhea. I do know that I have some immune function problems, but cannot find an immunologist in my area.
I do make sure that I am up to date with my immunization shots.
I have had pneumonia and on and off diarrhea. I do know that I have some immune function problems, but cannot find an immunologist in my area.
I do make sure that I am up to date with my immunization shots.
-
Carolee888
Re: Why were you tested for MGUS?
Hello Toni,
I posted something similar in the "smoldering forum" and didn't get a good response. It is the most curious question isn't it? How is someone diagnosed with an asymptomatic disease when they reportedly have no symptoms? I mean, the SPEP isn't a standard test so one would think that there would have to be an occasion for ordering it?
Anyway, I hope you get a better response here.
I was diagnosed with MGUS in 2005 after my PCP ordered a SPEP due to recurring sinus infections after a CT of the sinuses was basically negative. I had low normal IgM and low normal IgG until I became smoldering and now all uninvolved immunoglobulins are low ... in the red.
Worth mentioning is that I have had several infections - at least 4x per year - since the MGUS diagnosis and, as of late, infections nearly bimonthly. I also suffer from "post exertional malaise" that has worsened over time. This basically means that I get sick after exercise ... every time. Symptoms of fatigue, swollen glands, head ache, bone and joint pain. I think I'll post something to see if anyone else with frequent or recurring infections has similar symptoms.
Best
J
I posted something similar in the "smoldering forum" and didn't get a good response. It is the most curious question isn't it? How is someone diagnosed with an asymptomatic disease when they reportedly have no symptoms? I mean, the SPEP isn't a standard test so one would think that there would have to be an occasion for ordering it?
Anyway, I hope you get a better response here.
I was diagnosed with MGUS in 2005 after my PCP ordered a SPEP due to recurring sinus infections after a CT of the sinuses was basically negative. I had low normal IgM and low normal IgG until I became smoldering and now all uninvolved immunoglobulins are low ... in the red.
Worth mentioning is that I have had several infections - at least 4x per year - since the MGUS diagnosis and, as of late, infections nearly bimonthly. I also suffer from "post exertional malaise" that has worsened over time. This basically means that I get sick after exercise ... every time. Symptoms of fatigue, swollen glands, head ache, bone and joint pain. I think I'll post something to see if anyone else with frequent or recurring infections has similar symptoms.
Best
J
-
jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Why were you tested for MGUS?
Toni,
First to answer your question, I was diagnosed simply because my GP was smart enough to follow through with some additional testing when he found an only slightly elevated globulin level during my routine annual physical exam.
An important thing to remember is that several well-respected multiple myeloma specialists utilize the "CRAB-I" criteria (where the "I" stands for increasing, serious infections) for determining if one is symptomatic or not, not just the easier-to-remember "CRAB" criteria. So, if you truly are having increasingly serious infections, you may want to explore the subject of whether your are symptomatic or not with a top specialist that utilizes this criteria.
Note that while some doctors do use the CRAB-I criteria, you won't find it referenced in a IMWG consensus statement or in the NCCN guidelines.
First to answer your question, I was diagnosed simply because my GP was smart enough to follow through with some additional testing when he found an only slightly elevated globulin level during my routine annual physical exam.
An important thing to remember is that several well-respected multiple myeloma specialists utilize the "CRAB-I" criteria (where the "I" stands for increasing, serious infections) for determining if one is symptomatic or not, not just the easier-to-remember "CRAB" criteria. So, if you truly are having increasingly serious infections, you may want to explore the subject of whether your are symptomatic or not with a top specialist that utilizes this criteria.
Note that while some doctors do use the CRAB-I criteria, you won't find it referenced in a IMWG consensus statement or in the NCCN guidelines.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why were you tested for MGUS?
Wow! I didn't expect so many responses! Thank you so much for chiming in all.
Carolee888 - It sounds like you have multiple health issues contributing to your symptoms. I am sorry to hear that. I used to have some facial tingling / numbness / pain on the right cheek. interestingly, since I discontinued Cymbalta, it seems to have gone away. Check for drug side effects.
jhorner - Perhaps your post is where I got the idea for this one? I have post exertional fatigue. I was diagnosed with fibromyalgia many years ago. But it seems to be much worse in the past 3-4 years. It is within this time frame that I've had frequent sinus infections, bronchitis, ear infections, flu and pneumonia. There is an article in The Myeloma Beacon which indicates that MGUSers tend to have more frequent infections, although of the mild type (i.e. no need for hospitalization).
Multibilly - You are so amazingly healthy that it's a wonder your physician checked you further, You are indeed fortunate / blessed to have such an aware doctor. And then to discover SMM you have a truly fighting chance.
The clarification between common infections and serious infections is a good one. The only reason why they agreed to do a BMB on me was that I do get sick frequently. Fortunately, the BMB looks clean.
So, I've tried to adopt a healthy lifestyle: Unprocessed foods, gentle exercise, time outdoors, stress reduction. And for two months I did not get sick! I think it's good to stick to this regimen though.
I'd still like to hear from others. Please do chime in!
Carolee888 - It sounds like you have multiple health issues contributing to your symptoms. I am sorry to hear that. I used to have some facial tingling / numbness / pain on the right cheek. interestingly, since I discontinued Cymbalta, it seems to have gone away. Check for drug side effects.
jhorner - Perhaps your post is where I got the idea for this one? I have post exertional fatigue. I was diagnosed with fibromyalgia many years ago. But it seems to be much worse in the past 3-4 years. It is within this time frame that I've had frequent sinus infections, bronchitis, ear infections, flu and pneumonia. There is an article in The Myeloma Beacon which indicates that MGUSers tend to have more frequent infections, although of the mild type (i.e. no need for hospitalization).
Multibilly - You are so amazingly healthy that it's a wonder your physician checked you further, You are indeed fortunate / blessed to have such an aware doctor. And then to discover SMM you have a truly fighting chance.
The clarification between common infections and serious infections is a good one. The only reason why they agreed to do a BMB on me was that I do get sick frequently. Fortunately, the BMB looks clean.
So, I've tried to adopt a healthy lifestyle: Unprocessed foods, gentle exercise, time outdoors, stress reduction. And for two months I did not get sick! I think it's good to stick to this regimen though.
I'd still like to hear from others. Please do chime in!
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Why were you tested for MGUS?
Toni I was getting several infection in the spring (stomach flu, sinus infection, and styes). I read about a supplement that cures over 200 pathogens called MMS (Miracle Mineral Supplement). A man by the name of Jim Humble discovered it and you can read about him on his website. This treatment (MMS) can cure about any pathogen in hours and that included malaria, TB, athlete's foot, Candida or even herpes. It cures most bacterial, viral, and fungal infections and some blood borne diseases. I found out about it on a website called Second Opinion.
If you key in MMS on your computer you can find out how to mix it (very simple) and you take the solution twice a day. I have been on it since March and have had no infections. Also, colloidal silver is very good to fight infections too. With fall coming on you might want to try one of these.
If you key in MMS on your computer you can find out how to mix it (very simple) and you take the solution twice a day. I have been on it since March and have had no infections. Also, colloidal silver is very good to fight infections too. With fall coming on you might want to try one of these.
-
barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
Re: Why were you tested for MGUS?
Toni: Regarding" The only reason why they agreed to do a BMB on me was that I do get sick frequently. Fortunately, the BMB looks clean"
Glad you had a "clean" BMB after all the worrying. What did your plasma cell percentage end up at?
Glad you had a "clean" BMB after all the worrying. What did your plasma cell percentage end up at?
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why were you tested for MGUS?
Multibilly,
I have an appointment this Friday with my oncologist, but I am able to see test results online.
So far I do not see a percentage. What I do see is a report for
"FISH, multiple myeloma W/PLASMA SEPARATION FH - Details"
Result: Hybridization patterns within normal values in plasma-cell-enriched cells
That probably means everything is good, right? At least I assume so.
Thanks for asking!
I have an appointment this Friday with my oncologist, but I am able to see test results online.
So far I do not see a percentage. What I do see is a report for
"FISH, multiple myeloma W/PLASMA SEPARATION FH - Details"
Result: Hybridization patterns within normal values in plasma-cell-enriched cells
That probably means everything is good, right? At least I assume so.
Thanks for asking!
-
Toni - Name: Toni
- Who do you know with myeloma?: self - MGUS
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 51
Re: Why were you tested for MGUS?
I honestly don't know if this summary means all is good or not with respect to the FISH report. Remember that the various reports from a BMB are extremely hard for a lay person to read and understand, so make sure you leave the doc's office with notes on the summary of all the identified mutations and your plasma percentage (and any other highlights that the doc might pick out).
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Why were you tested for MGUS?
I was tested due to repeat mild anemia results by my GP and then an abnormal white cell count. Nothing ever found except MGUS.
28 posts
• Page 1 of 3 • 1, 2, 3