Hi,
My husband (age 39) was recently diagnosed with both IgA lambda multiple myeloma (asymptomatic) and multiple sclerosis. He had been followed for approximately 6 years for MGUS (elevated liver enzymes years ago triggered a bone marrow biopsy). After being diagnosed with multiple myeloma about 2 months ago, he was complaining about some peripheral neuropathy to the oncologist, so MRIs of his spine and brain were performed, revealing significant demyelination (indicative of MS). A fat pad biopsy for amyloidosis was negative.
My question is: Is it truly possible to have both multiple myeloma and MS? Could it be that there is some overlap in the clinical findings, and perhaps the multiple myeloma is a misdiagnosis masquerading as MS? His plasma cells are between 15-20% and I'm happy to give you more lab info if needed.
Lastly, is there anyone studying the relationship between free light chains, B-cells and MS and multiple myeloma? We are looking to get a second opinion, but aren't sure if we should see an MS specialist or multiple myeloma one -- ideally someone with a good understanding of both.
Any insight would be greatly appreciated.
Thanks in advance,
Adriana
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amp322 - Name: Adriana
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2014
- Age at diagnosis: 39
Re: New diagnoses: multiple myeloma and multiple sclerosis
Greetings Adriana,
Yes it is unfortunately possible to have both multiple myeloma and MS as I was diagnosed in 2012 with MS after a few years idiopathic neuropathy which resulted from mainly spinal lesions. The multiple myeloma manifested this year with sudden traumatic spinal fractures with compression that did initially make us think it was an MS relapse but only initially. It soon became apparent that this monster was much more aggressive than MS and needed emergency intervention.
What I know I am happy to share. Both of course are immune system impacting but the diagnoses are done measuring different criteria. Could they be related somehow? Interesting question and certainly possible. There was some overlap in symptoms for me, but different causes once tests were done.
I have a great MS specialist, but we have put MS intervention on hold for the acute multiple myeloma issues. For multiple myeloma, a good hematology oncology specialist with multiple myeloma background is a must have. My MS specialist is a neurologist. In my case, the multiple myeloma acute manifestation demanded priority and it was deemed unwise to continue immune modulating MS treatment while treating multiple myeloma.
Everyone is different but message me if needed. Glad to share my opinions and experiences.
Blessings to you and yours.
Yes it is unfortunately possible to have both multiple myeloma and MS as I was diagnosed in 2012 with MS after a few years idiopathic neuropathy which resulted from mainly spinal lesions. The multiple myeloma manifested this year with sudden traumatic spinal fractures with compression that did initially make us think it was an MS relapse but only initially. It soon became apparent that this monster was much more aggressive than MS and needed emergency intervention.
What I know I am happy to share. Both of course are immune system impacting but the diagnoses are done measuring different criteria. Could they be related somehow? Interesting question and certainly possible. There was some overlap in symptoms for me, but different causes once tests were done.
I have a great MS specialist, but we have put MS intervention on hold for the acute multiple myeloma issues. For multiple myeloma, a good hematology oncology specialist with multiple myeloma background is a must have. My MS specialist is a neurologist. In my case, the multiple myeloma acute manifestation demanded priority and it was deemed unwise to continue immune modulating MS treatment while treating multiple myeloma.
Everyone is different but message me if needed. Glad to share my opinions and experiences.
Blessings to you and yours.
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: New diagnoses: multiple myeloma and multiple sclerosis
Thank you so much for your candid response. We have been focusing on the MS treatment lately; I apologize for the delay. I wish you all the best in your treatment. It seems we are at the forefront of promising research. Please feel free to message me as well.
Best,
A
Best,
A
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amp322 - Name: Adriana
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2014
- Age at diagnosis: 39
Re: New diagnoses: multiple myeloma and multiple sclerosis
I found your post when I was wondering about any connections between multiple sclerosis and multiple myeloma other than (of course) the names and their occasional similar symptoms. My Dad was diagnosed with multiple sclerosis when I was in junior high (hint: a long, LONG time ago) and, although he had relapses through the years, he lived to be 87. He actually died of multiple myeloma, which he may have had a while before he was diagnosed. He died less than 6 weeks after he was diagnosed. He did not have any treatment as he was 87 and had a lot of other health issues too.
The odd thing, and maddening too, although 87 is a pretty good age, was that after he was diagnosed and we looked at the list of symptoms people with multiple myeloma may have, he had dozens of them. But when he complained of them, doctors (really one – not very good – doctor, in my opinion at least.) would say, "Well, that's your MS," or, "Well, that's your age," or, "Well, that's your prostate cancer."
True, he was old, he had prostate cancer, he had MS. But they also completely missed the multiple myeloma until way too late.
The reason I was researching this and saw your post was that my 41-year-old daughter has MS and the only risk factors she had for MS were having had mono at 16 and her grandfather had MS. I was reading something about genetic markers for multiple myeloma and thought I saw a word that is also connected to diagnosing MS and that led me to trying to find out if there is a link between MS and multiple myeloma.
Anyway, this probably isn't helpful to you, but I was interested in your post. I hope your husband is doing well. I can certainly attest that if he has relapsing/ remitting MS, your husband may be like my Dad and live a long life. And his multiple myeloma has certainly been diagnosed in a much more timely manner than my Dad's was.
But .... if you happen to learn anything yourselves about a possible connection between MS and multiple myeloma, like genetic markers and so on, if you would forward that info to me, I would sure appreciate it.
Good luck to both of you!
The odd thing, and maddening too, although 87 is a pretty good age, was that after he was diagnosed and we looked at the list of symptoms people with multiple myeloma may have, he had dozens of them. But when he complained of them, doctors (really one – not very good – doctor, in my opinion at least.) would say, "Well, that's your MS," or, "Well, that's your age," or, "Well, that's your prostate cancer."
True, he was old, he had prostate cancer, he had MS. But they also completely missed the multiple myeloma until way too late.
The reason I was researching this and saw your post was that my 41-year-old daughter has MS and the only risk factors she had for MS were having had mono at 16 and her grandfather had MS. I was reading something about genetic markers for multiple myeloma and thought I saw a word that is also connected to diagnosing MS and that led me to trying to find out if there is a link between MS and multiple myeloma.
Anyway, this probably isn't helpful to you, but I was interested in your post. I hope your husband is doing well. I can certainly attest that if he has relapsing/ remitting MS, your husband may be like my Dad and live a long life. And his multiple myeloma has certainly been diagnosed in a much more timely manner than my Dad's was.
But .... if you happen to learn anything yourselves about a possible connection between MS and multiple myeloma, like genetic markers and so on, if you would forward that info to me, I would sure appreciate it.
Good luck to both of you!
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Japan_Grandma - Name: Fran
- Who do you know with myeloma?: father
- When were you/they diagnosed?: 2011
- Age at diagnosis: 87
Re: New diagnoses: multiple myeloma and multiple sclerosis
Hi,
I was diagnosed with MS and MGUS at the same time three years ago. I'm not myeloma yet but high risk as I have a lytic lesion and slowly rising FLCs, m spike and anaemia so yes it's possible and very confusing as many of the symptoms of both diseases are the same. I'm IgA too.
My MS neurology professor won't let me have any disease-modifying treatment for my MS because I have MGUS so there must be a possible contraindication for taking some MS drugs when you have MGUS/myeloma?
I was diagnosed with MS and MGUS at the same time three years ago. I'm not myeloma yet but high risk as I have a lytic lesion and slowly rising FLCs, m spike and anaemia so yes it's possible and very confusing as many of the symptoms of both diseases are the same. I'm IgA too.
My MS neurology professor won't let me have any disease-modifying treatment for my MS because I have MGUS so there must be a possible contraindication for taking some MS drugs when you have MGUS/myeloma?
Re: New diagnoses: multiple myeloma and multiple sclerosis
Hi amp322,
I have had MS for 27 years but was not diagnosed for the first 12 years. I have done a Betaseron (interferon beta-1b) injection for the past 14 years. I was diagnosed with MGUS in 2004, but no one bothered to tell me until 2011, when my PCP mentioned he would run a test for MGUS along with my usual annual lab work. Since the test was still positive for MGUS, I attempted to get an appointment with a local hematologist without much success. I entered a natural history study at the NIH in 2011, but found that my age (70 at that time) made the 2-day trips from the West Coast to Bethesda very taxing physically and dropped out of the study. The NIH testing showed IgG lambda MGUS with an abnormal free light chain ratio and 94% abnormal PCs.
I did go to Seattle last year and had more testing, which still classified me as MGUS. This past year I have seen a hematologist locally and am now classified at stage II multiple myeloma by the ISS system. I have not stopped the Betaseron and my neurologist and hematologist have not recommended that I do so. With the new criteria, I'm probably eligible for treatment, with plasma cells 10-25%, abnormal FLCs, renal impairment, and anemia - except that I have to get my chronic sinus infection cleared up before any multiple myeloma treatment.
I get my next set of multiple myeloma labs in a couple of weeks and also see my neurologist for a regular visit. My MS is relatively benign, so I only see him every six months. There was a suggestion that I may have to stop the MS treatment if I start multiple myeloma treatment. I'll know more after the next 2 doctor appointments and labs.
I don't know if the above is any help to you, but did want to let you know that one can have both disorders.
Kay
I have had MS for 27 years but was not diagnosed for the first 12 years. I have done a Betaseron (interferon beta-1b) injection for the past 14 years. I was diagnosed with MGUS in 2004, but no one bothered to tell me until 2011, when my PCP mentioned he would run a test for MGUS along with my usual annual lab work. Since the test was still positive for MGUS, I attempted to get an appointment with a local hematologist without much success. I entered a natural history study at the NIH in 2011, but found that my age (70 at that time) made the 2-day trips from the West Coast to Bethesda very taxing physically and dropped out of the study. The NIH testing showed IgG lambda MGUS with an abnormal free light chain ratio and 94% abnormal PCs.
I did go to Seattle last year and had more testing, which still classified me as MGUS. This past year I have seen a hematologist locally and am now classified at stage II multiple myeloma by the ISS system. I have not stopped the Betaseron and my neurologist and hematologist have not recommended that I do so. With the new criteria, I'm probably eligible for treatment, with plasma cells 10-25%, abnormal FLCs, renal impairment, and anemia - except that I have to get my chronic sinus infection cleared up before any multiple myeloma treatment.
I get my next set of multiple myeloma labs in a couple of weeks and also see my neurologist for a regular visit. My MS is relatively benign, so I only see him every six months. There was a suggestion that I may have to stop the MS treatment if I start multiple myeloma treatment. I'll know more after the next 2 doctor appointments and labs.
I don't know if the above is any help to you, but did want to let you know that one can have both disorders.
Kay
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Kay - Name: Kay Wilson
- Who do you know with myeloma?: SMM
- When were you/they diagnosed?: 2014
- Age at diagnosis: 72
Re: New diagnoses: multiple myeloma and multiple sclerosis
Hi,
Just to add my two cents worth ... I went through MGUS to multiple myeloma (coming out of CR from tandem stem cell transplants) and after that treatment and some neurological problems, my neurologist thinks I may also have symptoms of multiple sclerosis because of some advancing demyelination and neuropathy.
I'm hoping there is some middle-of-the-road treatment that might work for both that is not too toxic! Will post when I know more.
Good luck everyone.
Just to add my two cents worth ... I went through MGUS to multiple myeloma (coming out of CR from tandem stem cell transplants) and after that treatment and some neurological problems, my neurologist thinks I may also have symptoms of multiple sclerosis because of some advancing demyelination and neuropathy.
I'm hoping there is some middle-of-the-road treatment that might work for both that is not too toxic! Will post when I know more.
Good luck everyone.
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Dinah
Re: New diagnoses: multiple myeloma and multiple sclerosis
I have also been trying to research a connection between MGUS and multiple sclerosis. I was diagnosed with both about 8 months ago. My oncologist and neurologist both insist that the two are not related, but I have run into several people who have both, which makes me curious to learn more.
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JLK
Re: New diagnoses: multiple myeloma and multiple sclerosis
I'm curious about this too. My spouse has had multiple sclerosis for years, came up anemic, and further testing has revealed light chain abnormalities, one lytic lesion on the humerus, and a clean 24-hour urine test.
The hematologist thought the light chain results could be the multiple sclerosis, but now with a lesion, I'm starting to feel concerned. We'll do an MRI on that lesion this week.
The hematologist thought the light chain results could be the multiple sclerosis, but now with a lesion, I'm starting to feel concerned. We'll do an MRI on that lesion this week.
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