I have peripheral neuropathy and am taking a total of 1800mg per day of Neurontin. It does not stop the pain which gets worse at evening time. Blood work shows an M spike (MGUS) and I have had edema of my legs for 2 years (mild).
Went to Dana Farber Cancer Institute and the doctor there thinks it could be POEMS syndrome based on those three symptoms.
I am very scared and in pain from the neuropathy. I don't want to have high dose chemotherapy and peripheral stem cell transplant if the diagnosis is not correct. I am 61 and my life has gone upside down as a result of the pain and anxiety over these possible diagnosis.
Before February of 2014 I was not in pain and my feet were my companions. Now they behave like cold burning appendages that I need to walk with.
I know I am writing in a multiple myeloma forum. That has been ruled out with BMB and 24 hr urine. The treatment is the same though.
Scared and in pain.
Forums
Re: POEMS Syndrome
Paulorlo,
I'm so sorry to hear that you are having such trouble. I had to do an internet search for POEMS Syndrome. You are right, there does seem to be some overlap with multiple myeloma, so welcome.
EJ and I went to Dana Farber after his diagnosis. They are wonderful there! Hopefully they will be able to help you. Have you asked them about seeing a pain specialist? I'm sure they have one on staff, or can refer you to one. You may also want to talk to them about an anti-anxiety medication. They can also help with pain.
Good luck - please let us know how you are doing.
Lyn
I'm so sorry to hear that you are having such trouble. I had to do an internet search for POEMS Syndrome. You are right, there does seem to be some overlap with multiple myeloma, so welcome.
EJ and I went to Dana Farber after his diagnosis. They are wonderful there! Hopefully they will be able to help you. Have you asked them about seeing a pain specialist? I'm sure they have one on staff, or can refer you to one. You may also want to talk to them about an anti-anxiety medication. They can also help with pain.
Good luck - please let us know how you are doing.
Lyn
-
Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: POEMS Syndrome
I'm very sorry to hear of the peripheral neuropathy problems that you're having, paulorlo.
I'm not sure exactly what you're question is at this point, so I can't really offer any advice. Could you perhaps explain a bit more what you would like to know?
As was already pointed out, you are in good hands at Dana-Farber. With a disease as rare as POEMS syndrome, it will be very important to be seen by doctors at a major center like Dana-Farber. They will have the experience to be able to properly diagnose what you have and, once you've been diagnosed, they also will be familiar with the latest research about how to treat the disease the best.
If you haven't already seen it, this article gives a very detailed overview of POEMS syndrome, including how it's diagnosed and treated:
http://emedicine.medscape.com/article/1097031-overview
It's definitely technical in many places, but I think it will be hard to find something detailed that isn't also technical.
Also, if you haven't already read it, the Wikipedia article on POEMS is probably a good place to start reading up on the disease:
http://en.wikipedia.org/wiki/POEMS_syndrome
I'm not sure exactly what you're question is at this point, so I can't really offer any advice. Could you perhaps explain a bit more what you would like to know?
As was already pointed out, you are in good hands at Dana-Farber. With a disease as rare as POEMS syndrome, it will be very important to be seen by doctors at a major center like Dana-Farber. They will have the experience to be able to properly diagnose what you have and, once you've been diagnosed, they also will be familiar with the latest research about how to treat the disease the best.
If you haven't already seen it, this article gives a very detailed overview of POEMS syndrome, including how it's diagnosed and treated:
http://emedicine.medscape.com/article/1097031-overview
It's definitely technical in many places, but I think it will be hard to find something detailed that isn't also technical.
Also, if you haven't already read it, the Wikipedia article on POEMS is probably a good place to start reading up on the disease:
http://en.wikipedia.org/wiki/POEMS_syndrome
Re: POEMS Syndrome
Thank you so much for your replies and kindness. I have the two major criteria (polyneuropathy and monoclonal gammopathy). The minor criteria is the edema of the legs.
This places a diagnosis of POEMS on me, but I do not want to go through high dose chemotherapy and pheripheral stem cell transplant if these symptoms are not POEMS and there is no cure for POEMS, as there is no cure for multiple myeloma. What quality of life is that?
Has anyone gone through this treatment and had a good quality of life? If it is MGUS-neuropathy or CDIP, I've just nuked myself for what?
There is no treatment for MGUS-neuropathy either. So I am left with destroying my immune system or chronic pain management. What a choice.
This places a diagnosis of POEMS on me, but I do not want to go through high dose chemotherapy and pheripheral stem cell transplant if these symptoms are not POEMS and there is no cure for POEMS, as there is no cure for multiple myeloma. What quality of life is that?
Has anyone gone through this treatment and had a good quality of life? If it is MGUS-neuropathy or CDIP, I've just nuked myself for what?
There is no treatment for MGUS-neuropathy either. So I am left with destroying my immune system or chronic pain management. What a choice.
Re: POEMS Syndrome
To your reply to this note, I would suggest that wiki is only a very basic place to start. I've recently been diagnosed after long years and many previous flares. I wonder if my diagnosis is wrong because most of you who speak of your experience with POEMS, well it's as if your life went to hell in a hand basket in your fifties or sixties and you were not sick before. That's not been my case.
I'm a little off track. I was going to mention that there are national sites that are better at describing the disease and seem more encompassing with relation to the symptoms, and how everyone's experience is a little different. I would suggest you look outside the realm of what your typical browsers will let you search. Find browsers that will open up your world to the rest of the European Union, the Scandinavian countries, and the areas in New Zealand, as well as Australia. There are lots of groups who are interested in looking into the details of this orphan disease.
There are so few of us that they call this an orphan disease. One that will get little help from the pharmacy companies, since it has little opportunity to make them money. So, in short, open up your browsers to find things in other languages, and then convert with the Google tool to be able to read them. You should find much more out there if you avoid the typical google or yahoo browsers ... and use them in combination rather then relying on them solely.
Also, again look into groups in other countries for info and, even better, look for data from suffers. That seems to be a little more informative at this point, after all, most in the medical industry are all about pushing the myeloma remedy, rather than looking fully at the why, what happens, what are the symptoms of the sufferers, and what are the same point of how we all got here. So in other words, how did we all end up with this illness based on what is similar in each of our stories of each suffer?
Can anyone who reads this, tell me what their life had been before they became ill? Like I say, I have been sick on and off most of my life with neurological and endocrine issues, and I have suffered lapses and relapses, but this one has been the longest and never lets up. I do have pain, but it's not neuropathy? I've had an EMG on one leg and the neurologist suggests that the pain is due to spinal problems at L4-5 and S1. Typical for the myeloma patient, I've read, but not listed as POEMS.
However, i have found that I have many neuro issues with the autonomic, the lymbic and sensory nervous system. So that seems to bring me home with some of the worldwide sufferers of final stage POEMS sufferers.
Can anyone tell me if I'm wrong or if they haven't able to find that info yet?
Anyway, I' m sorry your struggling so with the neuro pain. I certainly know what that's about,. After ten years in a row, its difficult to tell what a good day feels like anymore. You'll get better, once you start treatment, so I'm told, but I do believe that there are pain meds that will help with the neuropathy. I've tried the one you're on, called gabpentin, and it doesn't work for me either. I've found that, in extreme cases, hot baths, essential oil such as wintergreen, basil, Melisa, frankincense and others, help. Also, heating pads, or cold pads, whichever your body prefers during severe moments.There are neurological prescription cremes, but not all insurance covers them, so ask. Asking never hurts.
I'm forced to use opiates regularly, They help for most pain, but in severe neuro storms brought on from the overabundant production of the blood plasma, it does cause severe burning on the nerves, and I've found little other than those listed above that help.
vanette starr
I'm a little off track. I was going to mention that there are national sites that are better at describing the disease and seem more encompassing with relation to the symptoms, and how everyone's experience is a little different. I would suggest you look outside the realm of what your typical browsers will let you search. Find browsers that will open up your world to the rest of the European Union, the Scandinavian countries, and the areas in New Zealand, as well as Australia. There are lots of groups who are interested in looking into the details of this orphan disease.
There are so few of us that they call this an orphan disease. One that will get little help from the pharmacy companies, since it has little opportunity to make them money. So, in short, open up your browsers to find things in other languages, and then convert with the Google tool to be able to read them. You should find much more out there if you avoid the typical google or yahoo browsers ... and use them in combination rather then relying on them solely.
Also, again look into groups in other countries for info and, even better, look for data from suffers. That seems to be a little more informative at this point, after all, most in the medical industry are all about pushing the myeloma remedy, rather than looking fully at the why, what happens, what are the symptoms of the sufferers, and what are the same point of how we all got here. So in other words, how did we all end up with this illness based on what is similar in each of our stories of each suffer?
Can anyone who reads this, tell me what their life had been before they became ill? Like I say, I have been sick on and off most of my life with neurological and endocrine issues, and I have suffered lapses and relapses, but this one has been the longest and never lets up. I do have pain, but it's not neuropathy? I've had an EMG on one leg and the neurologist suggests that the pain is due to spinal problems at L4-5 and S1. Typical for the myeloma patient, I've read, but not listed as POEMS.
However, i have found that I have many neuro issues with the autonomic, the lymbic and sensory nervous system. So that seems to bring me home with some of the worldwide sufferers of final stage POEMS sufferers.
Can anyone tell me if I'm wrong or if they haven't able to find that info yet?
Anyway, I' m sorry your struggling so with the neuro pain. I certainly know what that's about,. After ten years in a row, its difficult to tell what a good day feels like anymore. You'll get better, once you start treatment, so I'm told, but I do believe that there are pain meds that will help with the neuropathy. I've tried the one you're on, called gabpentin, and it doesn't work for me either. I've found that, in extreme cases, hot baths, essential oil such as wintergreen, basil, Melisa, frankincense and others, help. Also, heating pads, or cold pads, whichever your body prefers during severe moments.There are neurological prescription cremes, but not all insurance covers them, so ask. Asking never hurts.
I'm forced to use opiates regularly, They help for most pain, but in severe neuro storms brought on from the overabundant production of the blood plasma, it does cause severe burning on the nerves, and I've found little other than those listed above that help.
vanette starr
Re: POEMS Syndrome
After many months of gleaning from this great site, I now feel I must reply.
I am now being treated for POEMS with Revlimid and dex. I also had been plagued with on and off health problems, neuro, bad infections, crippling pain. I was treated by neurologists, mostly with mass doses of steroids. Last year, my doctor convinced me to see a hematologist , thinking I had some type lymphoma or leukemia. I also developed rapid loss of hands and feet. They did workup for multile myeloma as I have Mspike, Bence Jonces, kappa/lambda are all out of whack. I have had kidney involvement, but PET scan showed no lytic lesions. I have elevated prolactin, low testosterone. enlarged lymps, etc.
I first was treated with IVIG/ Medrol, which was no help. I now have been on Rev/dex for four months. My doctor is hoping getting my blood work normal will get me in remission.
POEMS is so rare, and varies from patient to patient. Since it is so similar to myeloma, as for tracking labs, and doctors were not sure which I had, I have been learning all I can from this great resource.
I am now being treated for POEMS with Revlimid and dex. I also had been plagued with on and off health problems, neuro, bad infections, crippling pain. I was treated by neurologists, mostly with mass doses of steroids. Last year, my doctor convinced me to see a hematologist , thinking I had some type lymphoma or leukemia. I also developed rapid loss of hands and feet. They did workup for multile myeloma as I have Mspike, Bence Jonces, kappa/lambda are all out of whack. I have had kidney involvement, but PET scan showed no lytic lesions. I have elevated prolactin, low testosterone. enlarged lymps, etc.
I first was treated with IVIG/ Medrol, which was no help. I now have been on Rev/dex for four months. My doctor is hoping getting my blood work normal will get me in remission.
POEMS is so rare, and varies from patient to patient. Since it is so similar to myeloma, as for tracking labs, and doctors were not sure which I had, I have been learning all I can from this great resource.
Re: POEMS Syndrome
T Rex,
Sorry to hear of your POEMS diagnosis. I have smoldering myeloma (0% BMPC, 0.70 g/dL IgG M spike, immunoparesis low IgM, Bence Jones proteinuria positive urine IFE though UPEP is BJP negative), age 43 with MGUS, low M spike discovered age 39.
Until this August 2014, I've been healthy save for incredible knee swelling, which an attempt at surgery turned up no damage, and swelling worsened prompting an SPEP and MGUS finding in 2010. Also I've had a bone bruise per MRI since 2011 proximal tibia near knee.
The reason I wanted to respond to your post is that this September I began to experience lower leg edema that's still present. It's pretty bad and a BNP cardiac marker was performed, ultrasound for DVT, fat pad biopsy for amyloidosis – all done in response to the leg swelling. All of these were negative, but swelling persists.
A VEGF level test was performed also in January to rule out POEMS this year recently along with the BNP, FPFNA, due to the lower leg edema. VEGF was negative for POEMS (level was not above normal), though my VEGF level was abnormally LOW, the opposite of POEMS.
(Low VEGF has its own issues related, though not tied to, myeloma or POEMS, tied to CAD and other cardiac issues, and ALS, neurological issues. No follow-up has been done on the abnormally low VEGF yet, as the myeloma clinic doesn't seem interested in an abnormally too low VEGF result.)
So, while I don't have POEMS, I wanted to add that I was tested due to lower leg edema the same as you and also note that I also had low testosterone, which you remarked, and I've read low testosterone can be tied to POEMS. My testosterone was tested six months ago as I had unexplained mild anemia and, after everything else was tested, testosterone was tested due to small chance low testosterone could cause low EPO, thus anemia. We still don't know the cause for low testosterone at my age. Since beginning 100 mg weekly testosterone cyp injections, hemoglobin and hematocrit, RBC have improved.
Unfortunately I've developed persistent fever recently of 100 F (37.8 C), but that's something I'm sure that will be figured out. I've all but given up on finding root cause and preventing the lower leg edema.
POEMS seems to be so rare, i was surprised to find related posts, I hope your treatment is doing well.
Sorry to hear of your POEMS diagnosis. I have smoldering myeloma (0% BMPC, 0.70 g/dL IgG M spike, immunoparesis low IgM, Bence Jones proteinuria positive urine IFE though UPEP is BJP negative), age 43 with MGUS, low M spike discovered age 39.
Until this August 2014, I've been healthy save for incredible knee swelling, which an attempt at surgery turned up no damage, and swelling worsened prompting an SPEP and MGUS finding in 2010. Also I've had a bone bruise per MRI since 2011 proximal tibia near knee.
The reason I wanted to respond to your post is that this September I began to experience lower leg edema that's still present. It's pretty bad and a BNP cardiac marker was performed, ultrasound for DVT, fat pad biopsy for amyloidosis – all done in response to the leg swelling. All of these were negative, but swelling persists.
A VEGF level test was performed also in January to rule out POEMS this year recently along with the BNP, FPFNA, due to the lower leg edema. VEGF was negative for POEMS (level was not above normal), though my VEGF level was abnormally LOW, the opposite of POEMS.
(Low VEGF has its own issues related, though not tied to, myeloma or POEMS, tied to CAD and other cardiac issues, and ALS, neurological issues. No follow-up has been done on the abnormally low VEGF yet, as the myeloma clinic doesn't seem interested in an abnormally too low VEGF result.)
So, while I don't have POEMS, I wanted to add that I was tested due to lower leg edema the same as you and also note that I also had low testosterone, which you remarked, and I've read low testosterone can be tied to POEMS. My testosterone was tested six months ago as I had unexplained mild anemia and, after everything else was tested, testosterone was tested due to small chance low testosterone could cause low EPO, thus anemia. We still don't know the cause for low testosterone at my age. Since beginning 100 mg weekly testosterone cyp injections, hemoglobin and hematocrit, RBC have improved.
Unfortunately I've developed persistent fever recently of 100 F (37.8 C), but that's something I'm sure that will be figured out. I've all but given up on finding root cause and preventing the lower leg edema.
POEMS seems to be so rare, i was surprised to find related posts, I hope your treatment is doing well.
-
pinball - Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2010 MGUS, 2014 Smoldering
- Age at diagnosis: 39
Re: POEMS Syndrome
Pinball,
Sorry I took so long to respond, I'm also sorry to hear of your health problems.
I am IgG/kappa, with an M-spike around 0.75 g/dL after treatment. Yes, my ankles swell but I really don't know why. The abdomen swelling concerns me more. The burning pain in hands and feet that everyone seems to have with POEMS is a problem, but lack of use of hands and lower legs is my biggest problem.
My doctor believes getting the M-spike, light chains, immunoglobulins back to normal will stop the progression of this, and I maybe even regain loss of function and muscle. My latest labs look much better with a normal kappa/lambda ratio for first time. I will see him this week.
Let me say my VEGF was also negative, but being treated for POEMS, I'm not sure where the line is between POEMS and Myeloma. Both are treated the same so regardless if get better, I'm thankful.
Is it possible to have multiple myeloma or MGUS and also have POEMS?? I believe so. I also would like hear others comment on this complex disease.
Wishing every one better health.
Sorry I took so long to respond, I'm also sorry to hear of your health problems.
I am IgG/kappa, with an M-spike around 0.75 g/dL after treatment. Yes, my ankles swell but I really don't know why. The abdomen swelling concerns me more. The burning pain in hands and feet that everyone seems to have with POEMS is a problem, but lack of use of hands and lower legs is my biggest problem.
My doctor believes getting the M-spike, light chains, immunoglobulins back to normal will stop the progression of this, and I maybe even regain loss of function and muscle. My latest labs look much better with a normal kappa/lambda ratio for first time. I will see him this week.
Let me say my VEGF was also negative, but being treated for POEMS, I'm not sure where the line is between POEMS and Myeloma. Both are treated the same so regardless if get better, I'm thankful.
Is it possible to have multiple myeloma or MGUS and also have POEMS?? I believe so. I also would like hear others comment on this complex disease.
Wishing every one better health.
Re: POEMS Syndrome
Just a bit of information on POEMS.
It is a tough diagnosis to pin down in many circumstances.
The two mandatory findings are demyelinating polyneuropathy (usually evident on nerve testing with an EMG) and an M-protein (classically an IgA lambda protein; almost always a lambda).
There are three other major criteria (1 must be present):
If a plasma cell disorder is identified on bone marrow biopsy, treatments that are similar to those used for multiple myeloma can be given with consideration to avoid drugs that may worsen neuropathy.
It is a tough diagnosis to pin down in many circumstances.
The two mandatory findings are demyelinating polyneuropathy (usually evident on nerve testing with an EMG) and an M-protein (classically an IgA lambda protein; almost always a lambda).
There are three other major criteria (1 must be present):
- VEGF level abnormally high
- Sclerotic bone lesions
- Presence of Castleman's disease (a finding in lymph nodes).
If a plasma cell disorder is identified on bone marrow biopsy, treatments that are similar to those used for multiple myeloma can be given with consideration to avoid drugs that may worsen neuropathy.
-
Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: POEMS Syndrome
Dr. Valent, thanks for your response. My situation is not typical POEMS . Neurologist tested first thought it was CDIP as I do have polyneuropathy .No response to IVIG. During this time was also loosing lot weight, chronic respiratory infections, etc. Bloodwork had all these issues you mention, except VEGF not high. Also I'm IGG/kappa which isn't typical POEMS. The treatment has stopped progression and I'm thankful for that . All these diseases were words I'd never heard of. Again I thank you for responding and for this informative site.
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