Is any one aware of studies or connections related to MGUS / smoldering myeloma and stiff man syndrome?
Thank you
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Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
You are probably not going to find studies but there are reported associations between circulating antibodies and stiff man syndrome.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
Thank you.
Interesting, why no studies? Is it that rare?
Does anyone know if any of the antibodies in the bone marrow has correlated to stiff man syndrome?
Interesting, why no studies? Is it that rare?
Does anyone know if any of the antibodies in the bone marrow has correlated to stiff man syndrome?
Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
Hi Curious,
According to Wikipedia, the estimated total number of people with stiff man (or person) syndrome in all of the United States is perhaps 300 to 350 (based on an incidence of 1 out of every 1,000,000 people).
That's really, really rare, which makes it very difficult to say anything definite about the disease, let alone its correlation with other disorders such as smoldering myeloma or MGUS.
The Wikipedia article also has more information about the potential causes of the syndrome.
Hope this helps.
According to Wikipedia, the estimated total number of people with stiff man (or person) syndrome in all of the United States is perhaps 300 to 350 (based on an incidence of 1 out of every 1,000,000 people).
That's really, really rare, which makes it very difficult to say anything definite about the disease, let alone its correlation with other disorders such as smoldering myeloma or MGUS.
The Wikipedia article also has more information about the potential causes of the syndrome.
Hope this helps.
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JimNY
Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
Yes very rare Jim. I have three neurologists involved in this right now. Thanks for the response.
Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
Has there been any further developments on this topic? My husband has both stiff person and multiple myeloma, both diagnosed three years ago prior to any treatment.
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MoLinJo - Name: MoLinJo
- When were you/they diagnosed?: Early 2011
- Age at diagnosis: 54
Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
Dr. Jason Valent wrote:
Could you tell me where these are? My husband has both multiple myeloma and SPS and his doctors are very confused about how to distinguish his symptoms between the two conditions, whether and how to treat them at the same time (e.g., he gets IVIG, Velcade, dex and Revlimid right now).
You are probably not going to find studies but there are reported associations between circulating antibodies and stiff man syndrome.
Could you tell me where these are? My husband has both multiple myeloma and SPS and his doctors are very confused about how to distinguish his symptoms between the two conditions, whether and how to treat them at the same time (e.g., he gets IVIG, Velcade, dex and Revlimid right now).
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MoLinJo - Name: MoLinJo
- When were you/they diagnosed?: Early 2011
- Age at diagnosis: 54
Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
curious wrote:
My husband has both. He is being treated by a neurologist named Dr. Katz in CT as well as doctors at Yale. None of them have ever seen anyone with stiff person syndrome before except for one doctor at Yale has seen about 10 patients in his lifetime. But it was Dr. Katz who found the condition, not Yale.
Yes very rare Jim. I have three neurologists involved in this right now.
Thanks for the response.
My husband has both. He is being treated by a neurologist named Dr. Katz in CT as well as doctors at Yale. None of them have ever seen anyone with stiff person syndrome before except for one doctor at Yale has seen about 10 patients in his lifetime. But it was Dr. Katz who found the condition, not Yale.
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MoLinJo - Name: MoLinJo
- When were you/they diagnosed?: Early 2011
- Age at diagnosis: 54
Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
Very interesting case. I have not seen this issue before. At times, though, one needs to treat empirically for myeloma to determine the relationship. IF symptoms are not improving with anti-myeloma therapy as given (or getting worse), you may consider holding the Revlimid, as it can induce immune-mediated / inflammatory responses. From my (limited) understanding, SPS is mediated by an autoimmune issue (anti- GAD antibodies).
These are the only two articles that I found regarding SPS and myeloma:
EC Clow et al, "Stiff-person syndrome associated with multiple myeloma following autologous bone marrow transplantation," Muscle Nerve, Dec 2008 (link to abstract)
D Schiff, "Anti-GAD antibody positive stiff-limb syndrome in multiple myeloma," Journal of Neurooncology, Nov 2003 (link to PDF of article)
These are the only two articles that I found regarding SPS and myeloma:
EC Clow et al, "Stiff-person syndrome associated with multiple myeloma following autologous bone marrow transplantation," Muscle Nerve, Dec 2008 (link to abstract)
D Schiff, "Anti-GAD antibody positive stiff-limb syndrome in multiple myeloma," Journal of Neurooncology, Nov 2003 (link to PDF of article)
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: MGUS / Smoldering Myeloma - Stiff Man Syndrome
Thank you for the point about Revlimid. Hard to know how he is responding since he has so many different symptoms and they are volatile day to day.
One doctor at Yale said that both multiple myeloma and SPS are neoplastic, so even if the drugs only help control the multiple myeloma and aren't effective for SPS, the stem cell transplant might have a beneficial effect on both.
The difficulty is that if he has to go off of the IVIG in order to get the stem cell transplant. Without the IVIG, the SPS can get a lot worse. He is very lucky that he was prescribed IVIG long before he ever knew he had SPS because it was for neuropathy that was thought to have been caused by Lyme. We now know the neuropathy could have been from the multiple myeloma or the SPS.
Thanks again for your thoughts about this. Any further thoughts please definitely let me know.
One doctor at Yale said that both multiple myeloma and SPS are neoplastic, so even if the drugs only help control the multiple myeloma and aren't effective for SPS, the stem cell transplant might have a beneficial effect on both.
The difficulty is that if he has to go off of the IVIG in order to get the stem cell transplant. Without the IVIG, the SPS can get a lot worse. He is very lucky that he was prescribed IVIG long before he ever knew he had SPS because it was for neuropathy that was thought to have been caused by Lyme. We now know the neuropathy could have been from the multiple myeloma or the SPS.
Thanks again for your thoughts about this. Any further thoughts please definitely let me know.
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MoLinJo - Name: MoLinJo
- When were you/they diagnosed?: Early 2011
- Age at diagnosis: 54
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