Hi Folks,
I have a 6 month appointment coming up next week. I was diagnosed with MGUS (M-spike 1.5 g/dL, or 15 g/l) in 2016 about the same time I was being evaluated for various symptoms associated with peripheral polyneuropathy. I get muscle twitching, pins and needles, and I also have calf atrophy and accompanying weakness.
They say IgM MGUS is more commonly connected to neuropathy. Both my specialist and my neurologist are reluctant to attribute my symptoms to MGUS. My neurologist thinks it's more likely that I have a distal hereditary sensorimotor neuropathy.
It's just hard to believe that the 2 issues are not connected and that this is all a coincidence.
Is there any reason why IgG MGUS couldn't be the cause of the neuropathy? How common is neuropathy with IgG MGUS, and can there be a direct connection between the two, or is it probably just a coincidence when the two occur together?
Thank you!
Jon
Forums
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Neuropathy with IgG MGUS
Hi Jon,
I'm not sure there are any good stats out there on how common peripheral neuropathy is with IgG MGUS, so I will leave it to others on the forum to chime in on that topic.
But rather than second guess your neurologist, why not just get more thoroughly tested for distal hereditary sensory motor neuropathy? There are some specific gene patterns (e.g. duplications, deletions, or mutations of some specific genes such as PMP22) that often show up with this condition, and the doctor can run a gene panel based on a simple lab draw of blood to look for those anomalies.
Also, has your doctor ruled out amyloidosis as a potential cause of your peripheral neuropathy? That is, have you had a Congo red stain test performed on a bone marrow or fat pad biopsy sample?
Good luck with your follow-up appointment and let us know how things turn out.
I'm not sure there are any good stats out there on how common peripheral neuropathy is with IgG MGUS, so I will leave it to others on the forum to chime in on that topic.
But rather than second guess your neurologist, why not just get more thoroughly tested for distal hereditary sensory motor neuropathy? There are some specific gene patterns (e.g. duplications, deletions, or mutations of some specific genes such as PMP22) that often show up with this condition, and the doctor can run a gene panel based on a simple lab draw of blood to look for those anomalies.
Also, has your doctor ruled out amyloidosis as a potential cause of your peripheral neuropathy? That is, have you had a Congo red stain test performed on a bone marrow or fat pad biopsy sample?
Good luck with your follow-up appointment and let us know how things turn out.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Neuropathy with IgG MGUS
Hello MultiBilly,
Thank you for the response.
I did have a blood test that is designed to detect the most common types of Charcot-Marie-Tooth (CMT) disease variations that came back negative. CMT is a nerve disease that yields many of the symptoms I described. The test came back negative. However, as I have learned it is common for this to occur because they have not discovered all of the CMT variants. So in other words, I could still have a variation of CMT even though the test came back negative.
I have not had a bone marrow test or the fat pad biopsy test performed. I will ask my doctor about that at the next visit.
Thank you very much to you and to anyone else who considers responding!
Merry Christmas to all.
Jon
Thank you for the response.
I did have a blood test that is designed to detect the most common types of Charcot-Marie-Tooth (CMT) disease variations that came back negative. CMT is a nerve disease that yields many of the symptoms I described. The test came back negative. However, as I have learned it is common for this to occur because they have not discovered all of the CMT variants. So in other words, I could still have a variation of CMT even though the test came back negative.
I have not had a bone marrow test or the fat pad biopsy test performed. I will ask my doctor about that at the next visit.
Thank you very much to you and to anyone else who considers responding!
Merry Christmas to all.
Jon
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Neuropathy with IgG MGUS
Dear Jon,
I am in a similar situation; symptoms of polyneuropathy and (light chain) MGUS (lambda type), and a 50% chance of having CMT type II.
I still do not know what causes my neuropathy, which in the meantime has almost disappeared following vitamin B12 intake and a gluten-free diet. It can be CMT type II, B12 deficiency, gluten allergy / intolerance / sensitivity and / or amyloidosis (latter has been excluded by a whole range of tests). See also my other posts on this forum.
Anyway, as regards the CMT, I advise asking your neurologists for an electromyography to see if and whether the problem is axonal (CMT type II) or 'demyeliniserend' (don't know the English word, sorry) (CMT type I). There are neurologists who specialise in CMT (rare disease). Further, I note that DNA tests for CMT type II are not yet reliable.
All the best and happy new year to all of you.
I am in a similar situation; symptoms of polyneuropathy and (light chain) MGUS (lambda type), and a 50% chance of having CMT type II.
I still do not know what causes my neuropathy, which in the meantime has almost disappeared following vitamin B12 intake and a gluten-free diet. It can be CMT type II, B12 deficiency, gluten allergy / intolerance / sensitivity and / or amyloidosis (latter has been excluded by a whole range of tests). See also my other posts on this forum.
Anyway, as regards the CMT, I advise asking your neurologists for an electromyography to see if and whether the problem is axonal (CMT type II) or 'demyeliniserend' (don't know the English word, sorry) (CMT type I). There are neurologists who specialise in CMT (rare disease). Further, I note that DNA tests for CMT type II are not yet reliable.
All the best and happy new year to all of you.
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Ruben_1980 - Name: Ruben_1980
- Who do you know with myeloma?: I have (lambda) Light Chain MGUS
- When were you/they diagnosed?: June 2017
- Age at diagnosis: 36
Re: Neuropathy with IgG MGUS
Hi Ruben,
Thank you for taking the time to offer a reply. I have had an EMG and my neurologist has determined that I am not "demyelinating", so my situation is "axonal" in nature. This would mean that I am mostly likely afflicted with a CMT type 2 variant.
Prior to having the DNA test, my doctor told me that there is a good chance that the test could come back negative because they do not have tests yet for all of the mutations.
On a positive note, my M-spike went down to 1.1 g/dL (11 g/l) and my IgG number went down a couple of hundred points and my kappa-lambda ratio went down as well. Unfortunately, my IgA number crept a little lower too.
I'm waiting to hear back from my multiple myeloma specialist about his interpretation of my results.
Either way, I suspect that my first bone marrow biopsy is in the not too distant future.
I definitely need to eat better than I did over the holidays moving forward, so I'm going to take your thoughts on gluten to heart.
Would welcome any further thoughts from forum members about whether my IgG MGUS could be the cause of my neuropathy and how common neuropathy is with IgG MGUS.
Thanks,
Jon
Thank you for taking the time to offer a reply. I have had an EMG and my neurologist has determined that I am not "demyelinating", so my situation is "axonal" in nature. This would mean that I am mostly likely afflicted with a CMT type 2 variant.
Prior to having the DNA test, my doctor told me that there is a good chance that the test could come back negative because they do not have tests yet for all of the mutations.
On a positive note, my M-spike went down to 1.1 g/dL (11 g/l) and my IgG number went down a couple of hundred points and my kappa-lambda ratio went down as well. Unfortunately, my IgA number crept a little lower too.
I'm waiting to hear back from my multiple myeloma specialist about his interpretation of my results.
Either way, I suspect that my first bone marrow biopsy is in the not too distant future.
I definitely need to eat better than I did over the holidays moving forward, so I'm going to take your thoughts on gluten to heart.
Would welcome any further thoughts from forum members about whether my IgG MGUS could be the cause of my neuropathy and how common neuropathy is with IgG MGUS.
Thanks,
Jon
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Neuropathy with IgG MGUS
Jon,
I'm also IgG kappa monoclonal protein positive (high-risk MGUS / smoldering multiple myeloma) and for almost 2 years I've had a tingling sensation on my right big toe.
At first, the toe issue was attributed to severe spinal stenosis and modic endplate changes found on a 2015 full spinal MRI (checking for multiple myeloma lesions), but as of my most recent MGUS / smoldering myeloma workup, they have noted that the nerve-related issue is due to the monoclonal protein after all.
I'll discuss the new diagnosis during my next visit, but it's not a huge deal, I guess they finally just tied the tingling with the monoclonal protein. I'm glad it's very minor,
I just wanted to note that, at least in my case, IgG kappa can be associated with a "neuropathy due to paraproteinemia" diagnosis (that's how my diagnosis is exactly written) since you were asking if IgG MGUS is ever associated with neuropathy.
I'm also IgG kappa monoclonal protein positive (high-risk MGUS / smoldering multiple myeloma) and for almost 2 years I've had a tingling sensation on my right big toe.
At first, the toe issue was attributed to severe spinal stenosis and modic endplate changes found on a 2015 full spinal MRI (checking for multiple myeloma lesions), but as of my most recent MGUS / smoldering myeloma workup, they have noted that the nerve-related issue is due to the monoclonal protein after all.
I'll discuss the new diagnosis during my next visit, but it's not a huge deal, I guess they finally just tied the tingling with the monoclonal protein. I'm glad it's very minor,
I just wanted to note that, at least in my case, IgG kappa can be associated with a "neuropathy due to paraproteinemia" diagnosis (that's how my diagnosis is exactly written) since you were asking if IgG MGUS is ever associated with neuropathy.
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pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: Neuropathy with IgG MGUS
Hi Pinball,
Thank you for taking the time to offer a reply and best of luck to you moving forward!
Not sure if I'll ever know with any certainty where my peripheral neuropathy is emanating from.
Jon
Thank you for taking the time to offer a reply and best of luck to you moving forward!
Not sure if I'll ever know with any certainty where my peripheral neuropathy is emanating from.
Jon
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Neuropathy with IgG MGUS
Hi Jon,
I was very recently diagnosed with MGUS IgG light chain and have had issues with tingling toes and left hand for over a year. I am going to a neurologist in a few weeks (it took months for me to get the appointment).
This is all new and scary to me, hoping that by joining and reading this forum that I can find some hope.
I was very recently diagnosed with MGUS IgG light chain and have had issues with tingling toes and left hand for over a year. I am going to a neurologist in a few weeks (it took months for me to get the appointment).
This is all new and scary to me, hoping that by joining and reading this forum that I can find some hope.
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Glenn416 - Name: Glenn Toronto
- Who do you know with myeloma?: MGUS low IGG (lamda)
- When were you/they diagnosed?: Toronto
- Age at diagnosis: 45
Re: Neuropathy with IgG MGUS
Thank you for replying Glenn. It's interesting to learn that others are in a similar boat. Please keep in touch and good luck at your appointment. I will be very curious to find out what you learn.
Jon
Jon
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ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
9 posts
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