Where to begin ... As they say, at the beginning is a very good place to start. I haven't actually been diagnosed yet, but am going through the initial work up to try and figure out what is going on. In researching some of the possibilities that the doctor mentioned, along with what some of the early bloodwork results, I came across this wonderful site.
Before going any further, let me introduce myself and tell a bit about myself. My name is Mary, I'm 57 years old, grew up in Western New York and relocated to New Mexico in the sunny southwest in 1975 (just before the infamous Blizzard of '76 shut the city of Buffalo down for over a week). I'm lucky enough to have been married to my husband (and best friend) for 30 years now. For most of my life I've had the good luck to be healthy, which is why I am having a bit of a hard time coming to terms with the fact that something potentially serious may be going on. My mom was a registered nurse for 47 years, with the result that my brother and I grew up not having to go to the doctor very often. We had the mindset of suck it up, don't whine ... deal with it and move on.
Just over three years ago I began to have intermittent pain / tingling in one foot that has progressed to a pretty constant pain / burning in both legs from mid-calf on down. The neurologist that I was referred to diagnosed peripheral neuropathy since he couldn't determine the cause, did an EMG, and ordered some blood work to be done. The EMG confirmed there was nerve damage, and since the bloodwork showed a M-component level of 0.83, I was referred to one of the doctors at the New Mexico Cancer Center (in Albuquerque) to investigate further.
At my initial appointment, we talked about what was going on, and what some of the potential causes were. The four that heme tinned were MGUS, smoldering myeloma, multiple myeloma, and Waldenstrom's macroglobulinemia. He ordered more bloodwork, a bone marrow biopsy, and a full head to toe set of x-rays.
I'm still waiting on the results of the biopsy and x-rays but most of the bloodwork results seem to be in. Most of the results are in the normal range(s), but the ones that are most concerning and aren't, are listed below.
IgM - 1170 mg/dl
Kappa Free - 2.92 mg/dl
Kappa/Lambda Free Ratio - 4.17
M-Spike - 0.93 gm/dl
In addition, the IgG is at the lower end of normal at 687 mg/dl and the beta 2 microglobulin (DPC) mg/ is at the very top of normal at 2.2 mg/L.
My follow-up with him isn't until December 16th (to go over the results), so if anyone has any suggestions where I can research what the numbers potentially might mean, I would be very grateful. My husband very correctly says that patience isn't always my strongest asset and not knowing (or having something to look into and try to make sense of) will make me crazy. Gotta love a man that knows you so well and still loves you!
I want to thank the Beacon community, and look forward to getting to know the community.
Happy Holidays!
Mary
Forums
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Re: Just beginning the journey ...
Hi Mary,
Welcome to the forum and happy Thanksgiving weekend -although it's a shame that your circumstances have caused you to visit here.
Your IgM and kappa free light chain values seem to be elevated, which is why your doctor likely said that you could have anything from MGUS to Waldenstrom's macoglobulinemia (WM). Amyloidosis is also something that can be linked to IgM cellular disorders and it should also be eliminated as a possibility (your bone marrow biopsy test will likely be looking for amyloidosis via what is known as a Congo red staining test, but there are other tests for amyloidosis that may be considered as well).
An IgM cellular disorder is a bit of a unique and rare beast. Your bone marrow biopsy will be one of the key tests to help figure out which specific disease you may be suffering from. You won't be able to really say with any certainty which disease you have until those biopsy results are in and your doc evaluates all the other test findings along with those biopsy test results.
This is a very good paper by a well-respected multiple myeloma specialist at the Mayo in Scottsdale that addresses the topic of IgM-related disorders.
http://www.hematology.org/Thehematologist/Ask/3186.aspx
It will also be important to seek out a top multiple myeloma specialist to best deal with your disease once you get diagnosed. This is a recent thread on multiple myeloma specialists in Albuquerque.
https://myelomabeacon.org/forum/multiple-myeloma-specialist-albuquerque-t5866.html
Don't hesitate to ask any questions that you might have and try not to worry too much. Treatments these days for the various possible diseases are quite good and have advanced dramatically in the past few years.
Welcome to the forum and happy Thanksgiving weekend -although it's a shame that your circumstances have caused you to visit here.
Your IgM and kappa free light chain values seem to be elevated, which is why your doctor likely said that you could have anything from MGUS to Waldenstrom's macoglobulinemia (WM). Amyloidosis is also something that can be linked to IgM cellular disorders and it should also be eliminated as a possibility (your bone marrow biopsy test will likely be looking for amyloidosis via what is known as a Congo red staining test, but there are other tests for amyloidosis that may be considered as well).
An IgM cellular disorder is a bit of a unique and rare beast. Your bone marrow biopsy will be one of the key tests to help figure out which specific disease you may be suffering from. You won't be able to really say with any certainty which disease you have until those biopsy results are in and your doc evaluates all the other test findings along with those biopsy test results.
This is a very good paper by a well-respected multiple myeloma specialist at the Mayo in Scottsdale that addresses the topic of IgM-related disorders.
http://www.hematology.org/Thehematologist/Ask/3186.aspx
It will also be important to seek out a top multiple myeloma specialist to best deal with your disease once you get diagnosed. This is a recent thread on multiple myeloma specialists in Albuquerque.
https://myelomabeacon.org/forum/multiple-myeloma-specialist-albuquerque-t5866.html
Don't hesitate to ask any questions that you might have and try not to worry too much. Treatments these days for the various possible diseases are quite good and have advanced dramatically in the past few years.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Just beginning the journey ...
Bless you, and thank you so much for the link to that article. It certainly looks to be one that will help explain some of what can potentially happen. I've printed a copy out for my husband to read.
Hopefully Christmas will come early this year (in the form of good news), but only time will tell. If I understand it right, the results of the biopsy can sometimes take 2-3 weeks to come back, with the read for the set of full body x-rays potentially the same. Luckily the NMCC is excellent about keeping the online medical records updated so patients don't usually have to wait till their appointment to know the results.
Mary
Hopefully Christmas will come early this year (in the form of good news), but only time will tell. If I understand it right, the results of the biopsy can sometimes take 2-3 weeks to come back, with the read for the set of full body x-rays potentially the same. Luckily the NMCC is excellent about keeping the online medical records updated so patients don't usually have to wait till their appointment to know the results.
Mary
Re: Just beginning the journey ...
Hello Mary,
My full body/skeletal x-rays, CT scans, MRIs, and PET scans are always available the next day, which might not be that quick everywhere, but I am sure it wouldn't take two weeks for x-rays. I always request the CD together with the printed report, pay $3.00, and am done. My husband burns a duplicate of each CD and whenever we travel I have a copy of the most important stuff with us - for an emergency I hope doesn't happen.
I fill out a "release of records' request" at any medical place I go and have no problem accessing any records, including office visits / consultations, as soon as they are done. In fact, my image center mails the reports with secure e-mail also.
Kate
My full body/skeletal x-rays, CT scans, MRIs, and PET scans are always available the next day, which might not be that quick everywhere, but I am sure it wouldn't take two weeks for x-rays. I always request the CD together with the printed report, pay $3.00, and am done. My husband burns a duplicate of each CD and whenever we travel I have a copy of the most important stuff with us - for an emergency I hope doesn't happen.
I fill out a "release of records' request" at any medical place I go and have no problem accessing any records, including office visits / consultations, as soon as they are done. In fact, my image center mails the reports with secure e-mail also.
Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
Re: Just beginning the journey ...
I did get a CD, Kate, with copies of all the x-rays on them. I asked though, and the tech had no idea when they would be finished being read by a radiologist. I'm going to call the office on Monday to see if they can give me any update as to when they might be done. I certainly will take your advice on the medical records / release form. The biopsy, I think probably another week sounds reasonable to allow for results to show (due to the staining process).
The neurologist has me on gabapentin to address the peripheral neuropathy pain, but it hasn't been working very well for the past month or so. And I spoke to him about seeing if it needed to be adjusted or changed, he wanted to wait until after I saw the hematologist. Since the pain is affecting my ability to get more than 2 to 3 hours of solid sleep at a time, does it seem reasonable to ask him if he can do so now that I have seen a hematologist? I think it is, and my husband certainly does, but I thought I'd throw that question out there anyways.
Mary
The neurologist has me on gabapentin to address the peripheral neuropathy pain, but it hasn't been working very well for the past month or so. And I spoke to him about seeing if it needed to be adjusted or changed, he wanted to wait until after I saw the hematologist. Since the pain is affecting my ability to get more than 2 to 3 hours of solid sleep at a time, does it seem reasonable to ask him if he can do so now that I have seen a hematologist? I think it is, and my husband certainly does, but I thought I'd throw that question out there anyways.
Mary
Re: Just beginning the journey ...
Hi Mary,
You have gotten some very helpful advice already, and I don't think there is much to add. However, one possibility that has not been mentioned that your doctors may wish to consider as they review your case is POEMS syndrome.
What made me think about POEMS is the fact that you have neuropathy to a significant extent, and you also have a monoclonal gammopathy. Dr. Hoffman mentioned POEMS as a potential diagnosis in a discussion about a similar situation earlier this year. He also mentioned a few other possibilities, not all of which have been mentioned so far in this discussion.
Wikipedia has an article on POEMS that you may find helpful, and there also is an article from a few years back with detailed information on the diagnosis of POEMS:
A Dispenzieri, "POEMS syndrome: 2011 update on diagnosis, risk-stratification, and management," American Journal of Hematology, July 2011 (full text of article)
The one aspect of your case that suggests that POEMS is NOT a likely diagnosis is that you appear to have "kappa-restricted" disease, meaning that your kappa free light chains are the ones that are elevated, not your lambda free light chains. Most people with POEMS have lambda-restricted disease. However, about 10 percent of them have kappa-restricted disease, so having kappa-restricted disease does not rule out POEMS as a potential diagnosis.
Cheers!
You have gotten some very helpful advice already, and I don't think there is much to add. However, one possibility that has not been mentioned that your doctors may wish to consider as they review your case is POEMS syndrome.
What made me think about POEMS is the fact that you have neuropathy to a significant extent, and you also have a monoclonal gammopathy. Dr. Hoffman mentioned POEMS as a potential diagnosis in a discussion about a similar situation earlier this year. He also mentioned a few other possibilities, not all of which have been mentioned so far in this discussion.
Wikipedia has an article on POEMS that you may find helpful, and there also is an article from a few years back with detailed information on the diagnosis of POEMS:
A Dispenzieri, "POEMS syndrome: 2011 update on diagnosis, risk-stratification, and management," American Journal of Hematology, July 2011 (full text of article)
The one aspect of your case that suggests that POEMS is NOT a likely diagnosis is that you appear to have "kappa-restricted" disease, meaning that your kappa free light chains are the ones that are elevated, not your lambda free light chains. Most people with POEMS have lambda-restricted disease. However, about 10 percent of them have kappa-restricted disease, so having kappa-restricted disease does not rule out POEMS as a potential diagnosis.
Cheers!
Re: Just beginning the journey ...
Hello Mary,
Sorry to read about your troubles. I suffer from neuropathy also. I am currently on a chemo regimen that includes Velcade, which has resulted in numbness and pain in my feet and hands. The gabapentin 3x a day is helping, but not completely. My aunt has diabetes, and suffers too. She found this topical cream which gives some relief, especially after repeated use. I've used it for the last couple of weeks and it's helped me. It's called Real Time.
Godspeed.
Sorry to read about your troubles. I suffer from neuropathy also. I am currently on a chemo regimen that includes Velcade, which has resulted in numbness and pain in my feet and hands. The gabapentin 3x a day is helping, but not completely. My aunt has diabetes, and suffers too. She found this topical cream which gives some relief, especially after repeated use. I've used it for the last couple of weeks and it's helped me. It's called Real Time.
Godspeed.
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Just beginning the journey ...
Hi
I also have the IgM with kappa chains above normal and the ratio is above normal. My M-spike is less than 1.5 g/dL (started at 0.04 and now 0.5 g/dL) and the kappa and ratio increased slightly.
I'm still at a wait and let's keep eye on labs period.
I have hepatitis C and the doctor believes my MGUS is secondary to that, but I am on treatment for the HCV which is near a nondetected level (yay), but my M-spike and kappa increased slightly and the doctor is hoping it will decrease after the treatment has finished.
The waiting, and all the testing, absolutely can cause sleepless nights.
Best wishes.
I also have the IgM with kappa chains above normal and the ratio is above normal. My M-spike is less than 1.5 g/dL (started at 0.04 and now 0.5 g/dL) and the kappa and ratio increased slightly.
I'm still at a wait and let's keep eye on labs period.
I have hepatitis C and the doctor believes my MGUS is secondary to that, but I am on treatment for the HCV which is near a nondetected level (yay), but my M-spike and kappa increased slightly and the doctor is hoping it will decrease after the treatment has finished.
The waiting, and all the testing, absolutely can cause sleepless nights.
Best wishes.
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