[root710]

Peripheral neuropathy and IgM MGUS

by root710 on Wed Oct 12, 2016 1:33 pm

I was just diagnosed with IgM MGUS but my chief complaint is peripheral neuropathy in my feet and now hands. I still have some blood work pending, but I am wondering what to do about the neuropathy because it is severely limiting and starting to affect my work because my hands are going numb.

From what I have learned so far it seems that multiple myeloma and MGUS comprise only about 1 percent of a hematologist / oncologist's practice, and I'm sure it must be way less for a neurologist. My impression is that there may be a number of patients out there that have idiopathic or unexplained peripheral neuropathy that may in fact be part of an otherwise asymptomatic MGUS issue (especially for IgM MGUS). And, maybe most neurologists don't really have any experience with these symptoms as relates to MGUS.

Does anyone out there have advice as to where to go to have a case such as mine evaluated further? Is there any hope for getting some resolution to the neuropathy?

I know MGUS is generally just monitored and not treated, but what about when one is getting disabled by the neuropathy?

Lastly, is there, in fact, any way to treat the neuropathy? And if it can't be resolved, is it possible to limit the extent of future neurological damage?

Thank you in advance for any input you may have.

[Multibilly]

Re: Peripheral neuropathy and IgM MGUS

by Multibilly on Wed Oct 12, 2016 2:27 pm

Hi Root710,

I'll let others speak to how they cope with and treat their peripheral neuropathy (you can find lots of posts on this site regarding this subject). But in the context of IgM-MGUS-related peripheral neuropathy, you may find this to be insightful:

J Mikhael, "Ask the Hematologist: A Diagnostic Approach to Patients with an IgM monoclonal protein," The Hematologist, Sep 15, 2014 (full text of article)

Excerpt:

"Although peripheral neuropathy can occur with all forms of MGUS, it is most commonly associated with IgM-MGUS. Demonstration of IgM anti-myelin-associated glycoprotein (MAG) antibodies supports a causal relationship between IgM-MGUS and poly­neu­rop­athy but is not essential for the diagnosis. Because peripheral neuropathy can be caused by other processes that may co-exist with IgM-MGUS, the clinician is often faced with the dilemma of whether to assign the neuropathy to MGUS, and if so, what to do about it. The decision can be guided by the observations that the neuropathy associated with IgM-MGUS is characteristically a relatively benign, slowly progressive sensory process (although some cases can be severe and debilitating). Management is challenging as effective therapy is lacking. A minority of patients respond to rituximab and other immunomodulatory treatments are generally ineffective. As is the case with other plasma cell dyscrasia-associated neuropathies, the M protein concentration in IgM-MGUS-associated peripheral neuropathy does not correlate with disease severity, arguing against the use of myeloma-directed therapy to reduce the plasma cell burden as a treatment strategy for the neuropathy of IgM-MGUS."

Lastly, a second opinion by a good multiple myeloma specialist might provide you with some treatment options to consider in your case. If you let us know what city you are in, folks on this site can provide you with some recommendations of specialists to seek out.

[root710]

Re: Peripheral neuropathy and IgM MGUS

by root710 on Wed Oct 12, 2016 4:15 pm

Multibilly,

Thanks for your helpful post!

I am in the San Diego area but have not found any multiple myeloma specialists in the area. I was considering going up to Los Angeles, or over to Scottsdale, Arizona. But I also have no problem with just flying to whatever the best place in the country is if necessary.

I am open to suggestions from the forum community.

Thanks again.

[Multibilly]

Re: Peripheral neuropathy and IgM MGUS

by Multibilly on Wed Oct 12, 2016 4:38 pm

I live in Colorado, but my go-to multiple myeloma specialist is Dr. James Berenson in West Hollywood. There are also a couple of folks in San Diego on this forum that make the trek up to West Hollywood to see him. I can't say enough good things about him.

I'm sure others on this forum will also chime in about the specialists they use in Southern California.

[JimNY]

Re: Peripheral neuropathy and IgM MGUS

by JimNY on Wed Oct 12, 2016 9:30 pm

Hi root,

There have been a lot of discussions in the forum about myeloma specialists in California. Just type "california" into the search box and a list of relevant threads will come up, including one specifically about San Diego-area specialists (there is a myeloma specialist at UCSD - Dr. Ann Mohrbacher). There are several specialists in Los Angeles, as I'm sure you're already aware, and also out at City of Hope in Duarte.

Also, Dr. Shain posted some information about neuropathy a while back that you may find helpful. It duplicates somewhat the information Multibilly posted, but it may provide some additional helpful perspectives.

Good luck!

[root710]

Re: Peripheral neuropathy and IgM MGUS

by root710 on Fri Oct 14, 2016 12:18 pm

Thanks all for your replies. I have made an appointment with Dr. Berenson in the Los Angeles area. Sounds like I can then work with a hematologist in San Diego if needed after I finish my preliminary work up with him.

Unfortunately, the peripheral neuropathy issue doesn't sound very promising for getting much resolution from what I've been reading. So strange how the neuropathy severity doesn't seem to correlate with the level of paraprotein.

[Multibilly]

Re: Peripheral neuropathy and IgM MGUS

by Multibilly on Fri Oct 14, 2016 4:41 pm

Hey Root710,

I'll be curious what Dr. B has to say about why IgM patients are more prone to PN. I'm also curious what he will recommend for easing non-treatment-related PN. Good luck and let us know how things go.

[root710]

Re: Peripheral neuropathy and IgM MGUS

by root710 on Sun Oct 30, 2016 11:43 am

I have my appointment this Friday. I'm very anxious to see what is said about the neuropathy issue as well as the level of my disease. I have not yet had a bone marrow biopsy or full body bone scan. I have Bence Jones proteins in the urine but kidney function is fine so far. I've had some retinal issues but need to go for follow up now that I know I have MGUS or some early stage multiple myeloma. I will post what I find after my appointment. Thank you all very much for the helpful advice.

[swmorgan]

Re: Peripheral neuropathy and IgM MGUS

by swmorgan on Tue Jan 31, 2017 12:46 pm

Hello root710,

I'm curious as to what your doctor told you about the correlation between your IgM MGUS and your peripheral neuropathy. If you don't care to share that I completely understand.

I too am IgM MGUS and have idiopathic peripheral neuropathy. In fact it was a neurologist that led me to a myeloma specialist.

I let the neuropathy go for years before I ever went to see a specialist. I seriously thought it was due to tight running shoes, and the stabbing pains in my hips were due to excessive running and yard work. I am a very active person and over 50, so I just thought it came with the territory. A chiropractor friend actually suggested I see a neurologist.

Long story short, by the time I did see a neurologist I had damage to nerves that could not be reversed. I'm on gabapentin (Neurontin), and that seems to help some. Not as many wake up in the middle of the night and screaming from the pain. My right foot is very weak at times, and I've fractured a bone in it also. I'm sure if there is a relation between all that.

Anyway, I say all this to tell you to not ignore the peripheral neuropathy. That may be the thing that gives you the most problems and frustration. I know it does for me. Hang in there and I hope you find a good specialist that can help you.

[weimmom]

Re: Peripheral neuropathy and IgM MGUS

by weimmom on Thu Feb 02, 2017 7:27 am

Hi,

I was diagnosed with MGUS in 2009 with an IgM protein, high kappa free light chain as well as a high ratio. I also had anemia, (mild, but a significant drop of nearly 30 points) high creatinine, high ESR and CRP. I also have severe arthritis and RA.

Over the years, it has not changed much except other blood work and chemistry improved until 2016, and each blood test since, my hemoglobin is dropping steadily (anemia) as well as eGFR values. I have a lot of pain especially in my back and hips. I have had problems with my hands in the past, especially at night, but since September, I have had severe pain, numbness, and tingling in my arms and hands. It can be excruciating at night, and I have not been sleeping due to the pain. It does come and go, but I can't seem to hold anything for more than a few minutes without my hands going numb and having no feeling in them. I also get pins and needle sensations, and it is ongoing but varies in intensity. It is in both arms and hands.

I am having a nerve conduction test in a few weeks (finally) and am wondering about the progression of my MGUS and possible neuropathy related to either the MGUS or RA. My last screening was Feb 2016, and he told me that unless anything changed, he would see me in 3 years, but with my anemia and other factors, should I not be screened more frequently, especially with IgM protein?

I am 60 years old, very active, and take care of myself with exercise etc., but it is difficult with the pain and lack of energy and now the situation in my arms. I live in Canada, and although have a great health system, we have to wait for tests, etc. Also, I do have lesions and/or abnormalities but other than the degenerative disease, they say there is little change. I have been thinking of getting a second opinion. Any feedback would be appreciated.