I just "celebrated" my one year anniversary of my diagnosis of smoldering multiple myeloma. For someone who is referred to as asymptomatic, I am really suffering. I have terrible carpal tunnel syndrome. I awaken nightly from throbbing pain in my hips, knees and thighs. If I kneel on my left lower leg, it feels like the tissue is being ripped apart. I have burning and electric shocks throughout the day for no apparent reason. No amyloidosis, rheumatoid arthritis, or Sjogrens.
What gives? Will this continue to get worse? Is this a sign of progression? Is this "myeloma normal"?
Hard to just live your life when you deal with constant pain. Please help me understand.
Forums
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
Re: Peripheral neuropathy & smoldering myeloma
Hi Laurie,
Sorry to hear that you are still experiencing these difficulties. It must be maddening. Remembering that we aren't docs, here are a few things I would be asking myself if I were in your shoes:
Sorry to hear that you are still experiencing these difficulties. It must be maddening. Remembering that we aren't docs, here are a few things I would be asking myself if I were in your shoes:
- Did you ever have a bone marrow biopsy to confirm your original diagnosis of smoldering multiple myeloma?
- Did you ever have a PET/CT or MRI to confirm that no skeletal lesions were present in your body? Lesions can lead to PN and a skeletal xray survey can miss lesions.
- Has is been confirmed that you have no spinal compression?
- What are your M-spike and free-light chain values? Have you been evaluated for hypervicsosity (which can also lead to PN)?
- I believe you said earlier that you've met with a rheumatologist. Have you considered being evaluated by a neurologist?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Peripheral neuropathy & smoldering myeloma
Thank you so much for your reply!
I did have a bone marrow biopsy showing 10-15% plasma. I have compression of L5 and L6, and some bone spurs in my neck. PET scan, MRI and skeletal survey show no lesions or tumors. LDH is on the rise, and WBC is low. I have IgA lambda heavy chain, with no sign of light chains in urine or blood. Fat pad aspiration negative.
MD Anderson suggested Congo red stain on bone marrow, but local doc said no. I know the tricks for coping with PN. Just want to know why it is happening, does it get worse, and is this a sign of progression. MD Anderson said risk of progression was 58% in 10 years.
You know as much about this disease as my doc, so I'm grateful for your opinions
I did have a bone marrow biopsy showing 10-15% plasma. I have compression of L5 and L6, and some bone spurs in my neck. PET scan, MRI and skeletal survey show no lesions or tumors. LDH is on the rise, and WBC is low. I have IgA lambda heavy chain, with no sign of light chains in urine or blood. Fat pad aspiration negative.
MD Anderson suggested Congo red stain on bone marrow, but local doc said no. I know the tricks for coping with PN. Just want to know why it is happening, does it get worse, and is this a sign of progression. MD Anderson said risk of progression was 58% in 10 years.
You know as much about this disease as my doc, so I'm grateful for your opinions
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
Re: Peripheral neuropathy & smoldering myeloma
IgA-type SMM? If you google on "IgA peripheral neuropathy plasmapheresis", you will find some hits that talk about using plasmapheresis as a treatment to reduce the PN in IgA patients. Just a thought to discuss with your specialist.
Have any of your docs attributed the PN to your spinal compression and neck spurs? I'm not a doc, but this seems like it could be a potential cause of your PN?
Have any of your docs attributed the PN to your spinal compression and neck spurs? I'm not a doc, but this seems like it could be a potential cause of your PN?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Peripheral neuropathy & smoldering myeloma
Multibilly has asked some good questions. The only question I would add is mainly one of clarification, which is: When did the pain that you are describing start to occur? Was it already occurring when you got your smoldering myeloma diagnosis, or is it something that occurred more recently?
If it occurred more recently, then what has been going on with your M-spike since before and after the pain started? Also, what about other potential disease markers, such as calcium levels, hemoglobin, and creatinine levels? Are those results moving in any particular directions?
If it occurred more recently, then what has been going on with your M-spike since before and after the pain started? Also, what about other potential disease markers, such as calcium levels, hemoglobin, and creatinine levels? Are those results moving in any particular directions?
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JimNY
Re: Peripheral neuropathy & smoldering myeloma
Hi Laurie, I am posting because my myeloma was discovered after a carpal tunnel work-up was negative. I was getting horrible numbness in my hands. I am also IgA (kappa). The doctors I saw said it could be the myeloma cells irritating the nerves.
Well, after almost 6 months of induction, there is no difference in the numbness. I sleep with wrist guards every night and I use a pillow between my knees when I sleep on my side. There seems to be a lot of folks with myeloma and carpal tunnel (is it a coincidence, or is there a relationship .... I don't know ... they don't know?)
You may want to search "peripheral neuropathy" in the forums to find means of treatment. My doctor wants me to try acupuncture, but there are prescription meds that can help too. Maybe discuss with your doctor.
Best wishes ... you are not alone!
Well, after almost 6 months of induction, there is no difference in the numbness. I sleep with wrist guards every night and I use a pillow between my knees when I sleep on my side. There seems to be a lot of folks with myeloma and carpal tunnel (is it a coincidence, or is there a relationship .... I don't know ... they don't know?)
You may want to search "peripheral neuropathy" in the forums to find means of treatment. My doctor wants me to try acupuncture, but there are prescription meds that can help too. Maybe discuss with your doctor.
Best wishes ... you are not alone!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Peripheral neuropathy & smoldering myeloma
So glad to hear (and saddened at the same time) that there are others out there like me.
To answer a few questions, the pain started December 2013 and was the initial catalyst for my diagnosis. Prior to that, I had walked a 60-mile walk, with months of training, and I believe this sparked something that had been (no pun intended) smoldering for a while. My internist did not even send me to an ortho ... I went straight to a hematologist. He put some pieces together (who gets shingles at 50?).
I did google PN with SMM and plasmaphersis. What an eye opener!! Now we're getting somewhere. I am scheduling an appointment with a myeloma specialist rather than my very nice but overworked hemotologist / oncologist. This disease is too insidious and complicated to settle for a general oncologist. I am going to try Cymbalta (duloxetine) (giving up my Tramadol is going to hurt) and acupuncture. The wrist splints help a lot (I work on a computer ALL DAY LONG), as does ibuprofen and heat. The best medicine I've found so far is my 70 pound Golden Retriever, who always knows when I am blue, but doesn't know he isn't a lap dog.
Thank you all. Best day in a long time
To answer a few questions, the pain started December 2013 and was the initial catalyst for my diagnosis. Prior to that, I had walked a 60-mile walk, with months of training, and I believe this sparked something that had been (no pun intended) smoldering for a while. My internist did not even send me to an ortho ... I went straight to a hematologist. He put some pieces together (who gets shingles at 50?).
I did google PN with SMM and plasmaphersis. What an eye opener!! Now we're getting somewhere. I am scheduling an appointment with a myeloma specialist rather than my very nice but overworked hemotologist / oncologist. This disease is too insidious and complicated to settle for a general oncologist. I am going to try Cymbalta (duloxetine) (giving up my Tramadol is going to hurt) and acupuncture. The wrist splints help a lot (I work on a computer ALL DAY LONG), as does ibuprofen and heat. The best medicine I've found so far is my 70 pound Golden Retriever, who always knows when I am blue, but doesn't know he isn't a lap dog.
Thank you all. Best day in a long time
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
Re: Peripheral neuropathy & smoldering myeloma
I would make a few points. When a significant neuropathy appears in the setting of an underlying monoclonal gammopathy, it is paramount to make sure the former is not caused by the latter – because, if it is, treatment is indicated.
There are numerous ways the two can be related:
1. Myeloma with paraneoplastic neuropathy
2. POEMS syndrome (of particular concern, given the painful aspect to your neuropathy)
3. Amyloidosis (of particular concern here given possible carpal tunnel)
4. Cryoglobulonemia.
I would not simply suffer with this significant syndrome without aggressive investigation. I would pursue amyloidosis further - Congo red on bone marrow biopsy makes sense. If negative, perhaps nerve biopsy. I would check skeletal survey for sclerotic (not lytic) lesions to rule out POEMS. If equivocal, I would send for a check of VEGF level. I also would send for a check for cryoglobulins.
If ALL is totally negative, it is not totally crazy to treat the myeloma. Plasmapheresis could be tried diagnostically (if pain gets better with drop in paraprotein, then you know you need further treatment). But, as a treatment by itself, plasmapheresis offers only very short-term benefit.
My main point is not to accept the status quo. I hope you find some answers and begin to feel better.
There are numerous ways the two can be related:
1. Myeloma with paraneoplastic neuropathy
2. POEMS syndrome (of particular concern, given the painful aspect to your neuropathy)
3. Amyloidosis (of particular concern here given possible carpal tunnel)
4. Cryoglobulonemia.
I would not simply suffer with this significant syndrome without aggressive investigation. I would pursue amyloidosis further - Congo red on bone marrow biopsy makes sense. If negative, perhaps nerve biopsy. I would check skeletal survey for sclerotic (not lytic) lesions to rule out POEMS. If equivocal, I would send for a check of VEGF level. I also would send for a check for cryoglobulins.
If ALL is totally negative, it is not totally crazy to treat the myeloma. Plasmapheresis could be tried diagnostically (if pain gets better with drop in paraprotein, then you know you need further treatment). But, as a treatment by itself, plasmapheresis offers only very short-term benefit.
My main point is not to accept the status quo. I hope you find some answers and begin to feel better.
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Dr. James Hoffman - Name: James E. Hoffman, M.D.
Beacon Medical Advisor
Re: Peripheral neuropathy & smoldering myeloma
Thank you for your insights, Dr. Hoffman. While none of those alternatives sound particularly wonderful, they are all better than not knowing. I`m going to Winship to see if I can get some answers.
Thanks all for your help. I'll keep you posted!
Thanks all for your help. I'll keep you posted!
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
Re: Peripheral neuropathy & smoldering myeloma
Well, I got in to see a myeloma specialist here, and am scheduled for another bone marrow biopsy and a nerve biopsy next week. Talk of amyloidosis again, and he thinks this might be small fiber neuropathy. Not sure what that will mean for my treatment plan. He thinks it's not amyloid, but wants to rule it out. Should have answers by early June.
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ldahle1 - Name: Laurie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: February 2014
- Age at diagnosis: 53
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