I have been battling neuropthy for a couple of years now. The doctors kept saying it was my diabetes. I was having a hard time believing that, since my diabetes has never been bad and is completely controlled with diet.
So I asked to see another doctor besides the ones I had been to for it, because all they were wanting to do was drug me up and use me as a Guinea pig and I wanted answers, not drugs.
My primary care doctor referred me to a neurologist who ordered a bunch of blood work. Well, he called and left me a message Friday saying he wanted to send me to a hematologist at a cancer center -- that my SPEP showed up positive. He said he was going on vacation for the next week and didn't want it to wait till he got back.
I went to the hematologist this past Wednesday and he diagnosed me with MGUS till further testing was done, and ordered more blood work and said if it is the same, then he was going to order a bone marrow biopsy to find out if it is multiple myeloma. He has a website that I can get on that keeps my medical records on, and some of my blood tests have come back, but of course I don't understand them.
I go back this Wednesday to get the results and see where we go from there. I am confused and scared, to say the least. Been researching and everything else.
I am in pain all the time in my hips and knees and shoulders and feet badly. Is it possible it is from this? What are the chances of it being myeloma?
I have so many questions and just could use some advice and what things I should discuss with my doctor when I see him again.
Thank u in advance, Karen
Forums
Re: Recently diagnosed with MGUS (further testing underway)
Any new diagnosis is scary and anxiety provoking for sure. Lets see what testing demonstrates.
MGUS or monoclonal gammopathy of undetermined significance is a premalignant condition. It can be followed for years and decades without the disease progressing to multiple myeloma (if at all in some folks).
The rest of the work-up for MGUS will be important - bone marrow biopsy, imaging (skeletal x-ray survey +/- PET/CT), 24 hour urine, neurological antibody testing, etc.
When neurologists cannot not find a typical neurological cause for peripheral neuropathy, it is called cryptogenic peripheral neuropathy. About a third of those cases can be related to parapotein production or an MGUS. Monoclonal paraprotein conditions such MGUS can be associated with different syndromes or reasons for peripheral neuropathy:
Keep us updated. And as always, if possible, I would recommend getting to a multiple myeloma specialist.
MGUS or monoclonal gammopathy of undetermined significance is a premalignant condition. It can be followed for years and decades without the disease progressing to multiple myeloma (if at all in some folks).
The rest of the work-up for MGUS will be important - bone marrow biopsy, imaging (skeletal x-ray survey +/- PET/CT), 24 hour urine, neurological antibody testing, etc.
When neurologists cannot not find a typical neurological cause for peripheral neuropathy, it is called cryptogenic peripheral neuropathy. About a third of those cases can be related to parapotein production or an MGUS. Monoclonal paraprotein conditions such MGUS can be associated with different syndromes or reasons for peripheral neuropathy:
- Myelin associated glyocoprotein (MAG)-neuropathy is associated with the production of IgM proteins and is the result of myelin destrucution. Myelin is the shealth around your nerves that allows for fast conduction of signals.
- Amyloidosis can affect lots of organs including nerves, GI tract, kidneys, muscles, and heart. It is caused by the deposition of the paraprotein in your organs, and generally more frequently involves lambda rather than kappa light chains.
- POEMS syndrome is an an even more rare condition. POEMS stands for Polyneuropathy, Organomegaly, Endocrionopathy, Monoclonal paraprotein, and Skin changes. This is almost exclusively a lambda light chain-producing disease and caused, at least in theory, by the over production of a growth factor called vascular endothelial growth factor (VEGF). Unfortunately, treatment of POEMS with drugs known as VEGF antagonists is not as successful as one would predict.
Keep us updated. And as always, if possible, I would recommend getting to a multiple myeloma specialist.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Recently diagnosed with MGUS (further testing underway)
I have a follow-up question. Dr. Shain said that IgM (over)production can be associated with myelin destruction. I have a friend who has been diagnosed with Waldenstrom's macroglobulinemia (WM), partly based on a high IgM count. He has significant cognitive impairment. (Very sad to see and hugely frustrating to him.)
From the little reading I've done, I was under the impression that the cognitive impairment was mainly caused by hyperviscosity of his blood. But Dr. Shain's comment makes me wonder if myelin destruction is also involved. And, if so, is myelin destruction reversible?
From the little reading I've done, I was under the impression that the cognitive impairment was mainly caused by hyperviscosity of his blood. But Dr. Shain's comment makes me wonder if myelin destruction is also involved. And, if so, is myelin destruction reversible?
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Recently diagnosed with MGUS (further testing underway)
Oh, and the most important thing I should have mentioned in my previous post! ...
Karen,
Dr. Shain is completely right about a diagnosis of MGUS, smoldering myeloma, or symptomatic multiple myeloma being a really scary thing. But you've come to a great place here at The Myeloma Beacon for good information and a supportive community. For me, one of the most important things is knowing that I'm not alone in facing this disease. It's a huge help to learn from others who are going through the same things I'm going through and to be encouraged by their courage and successes.
One bit of advice to newcomers that you'll see time and again here is to make sure you at least consult with a myeloma specialist before beginning any treatment. The disease is so complex and individualized, and the treatment landscape is changing so rapidly, that it's important that your doctor is someone who is really up to date on things. You can find a list of myeloma treatment centers here (https://myelomabeacon.org/resources/treatment-centers/).
Best of luck to you! Please keep us posted on your upcoming test results.
Karen,
Dr. Shain is completely right about a diagnosis of MGUS, smoldering myeloma, or symptomatic multiple myeloma being a really scary thing. But you've come to a great place here at The Myeloma Beacon for good information and a supportive community. For me, one of the most important things is knowing that I'm not alone in facing this disease. It's a huge help to learn from others who are going through the same things I'm going through and to be encouraged by their courage and successes.
One bit of advice to newcomers that you'll see time and again here is to make sure you at least consult with a myeloma specialist before beginning any treatment. The disease is so complex and individualized, and the treatment landscape is changing so rapidly, that it's important that your doctor is someone who is really up to date on things. You can find a list of myeloma treatment centers here (https://myelomabeacon.org/resources/treatment-centers/).
Best of luck to you! Please keep us posted on your upcoming test results.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Recently diagnosed with MGUS (further testing underway)
I appreciate all the advice. I do have a wonderful doctor who is completely up to date even knows what new meds are coming out and when. He's a Christian and that is a big help to me also. I go back to see him on Wednesday to get the blood results, so I will keep y'all updated.
I am still wondering if it is the MGUS or the possible myeloma that is possibly what's causing my pain in my joints and my neuropathy?
I apologize if you answered already because not only am I going through this, my son a United States Marine came into town on Tuesday and this all came out the Friday before he came home. Had VBS this week and we are having a welcome home gathering today so people can see him while he's home. So as fast as I want Wednesday to get here to get the results, I also want it to go slow so that my time with him home doesn't end too fast.
Thank all y'all again any advice is welcome.
I am still wondering if it is the MGUS or the possible myeloma that is possibly what's causing my pain in my joints and my neuropathy?
I apologize if you answered already because not only am I going through this, my son a United States Marine came into town on Tuesday and this all came out the Friday before he came home. Had VBS this week and we are having a welcome home gathering today so people can see him while he's home. So as fast as I want Wednesday to get here to get the results, I also want it to go slow so that my time with him home doesn't end too fast.
Thank all y'all again any advice is welcome.
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sknc0604 - Name: Karen
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 43
Re: Recently diagnosed with MGUS (further testing underway)
I have a question where does alkaline phosphatase levels fit in with myeloma
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sknc0604 - Name: Karen
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 43
Re: Recently diagnosed with MGUS (further testing underway)
Hi Karen,
This forum discussion, particularly the response from Dr. Voorhees, may be helpful to you.
"Elevated both calcium & alkaline phosphatase"
Are your alkaline phosphatase levels elevated?
This forum discussion, particularly the response from Dr. Voorhees, may be helpful to you.
"Elevated both calcium & alkaline phosphatase"
Are your alkaline phosphatase levels elevated?
Re: Recently diagnosed with MGUS (further testing underway)
Mike,
Regarding your friend with Waldenstroms ... Issues with MAG or other demyelinating problems associated with paraproteins (IgM or other) are predominantly peripheral in nature. I have not seen or heard of it affecting the CNS (central nervous system). Hyperviscositiy can, for sure, with slugding of the blood etc. I have a number patients that note marked changes in their sensorium after therapy.
If it is pretty significant,
1) I hope that he is getting therapy, including plasma exchange and
2) If persistent, in spite of therapy, consider a very rare issues associated with WM - Bing-Neel syndrome. BNS is CNS involvement by the WM. It can cause a number of symptoms: headaches, mental status changes, seizures, fatigue among others. A lumbar puncture is required for diagnosis.
Regarding your PN and bone aches, Karen. It will take a bit longer to link the two. Bone aches are much less likely to be associated with WM in my opinion. Please pass on a thanks to your son from all of us for his service to us and our country.
Alkaline phosphatase is a marker primarily for liver function (along with AST, ALT, and total bilirubin). It is mainly a measurement of intact vs blocked biliary tree function. Alkaline phosphatase can also be elevated in the setting of bone disease as a component of osteoblast/osteocalst balance. ALP levels have been associated with WM - though honestly I do not know the biological link. ALP levels are not a component of staging or risk stratification for myeloma.
Regarding your friend with Waldenstroms ... Issues with MAG or other demyelinating problems associated with paraproteins (IgM or other) are predominantly peripheral in nature. I have not seen or heard of it affecting the CNS (central nervous system). Hyperviscositiy can, for sure, with slugding of the blood etc. I have a number patients that note marked changes in their sensorium after therapy.
If it is pretty significant,
1) I hope that he is getting therapy, including plasma exchange and
2) If persistent, in spite of therapy, consider a very rare issues associated with WM - Bing-Neel syndrome. BNS is CNS involvement by the WM. It can cause a number of symptoms: headaches, mental status changes, seizures, fatigue among others. A lumbar puncture is required for diagnosis.
Regarding your PN and bone aches, Karen. It will take a bit longer to link the two. Bone aches are much less likely to be associated with WM in my opinion. Please pass on a thanks to your son from all of us for his service to us and our country.
Alkaline phosphatase is a marker primarily for liver function (along with AST, ALT, and total bilirubin). It is mainly a measurement of intact vs blocked biliary tree function. Alkaline phosphatase can also be elevated in the setting of bone disease as a component of osteoblast/osteocalst balance. ALP levels have been associated with WM - though honestly I do not know the biological link. ALP levels are not a component of staging or risk stratification for myeloma.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Recently diagnosed with MGUS (further testing underway)
Beta 2 microglobulin 1.7 mg/L
IgG, quant 792 mg/dL
IgM, quant 216 mg/dL
IgA, quant 145 mg/dL
Kappa light chain, free 10.58 mg/L
Lambda light chain, free 14.83 mg/L
Free K/L ratio 0.71
This is part of my blood work. Can I get translation from someone who knows?
IgG, quant 792 mg/dL
IgM, quant 216 mg/dL
IgA, quant 145 mg/dL
Kappa light chain, free 10.58 mg/L
Lambda light chain, free 14.83 mg/L
Free K/L ratio 0.71
This is part of my blood work. Can I get translation from someone who knows?
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sknc0604 - Name: Karen
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 43
Re: Recently diagnosed with MGUS (further testing underway)
Hi Dr. Shain,
Thanks for the reply to my question about Waldenstrom's. It's encouraging to me to hear that myelin damage due to high IgM is not likely to cause CNS issues. My friend is getting treatment, and his IgM and hyperviscosity have decreased some so far. Unfortunately cognitive impairment is still fairly apparent.
And thanks for the info on Bing-Neel syndrome. I'd not heard of that before.
Thanks for the reply to my question about Waldenstrom's. It's encouraging to me to hear that myelin damage due to high IgM is not likely to cause CNS issues. My friend is getting treatment, and his IgM and hyperviscosity have decreased some so far. Unfortunately cognitive impairment is still fairly apparent.
And thanks for the info on Bing-Neel syndrome. I'd not heard of that before.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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