The Myeloma Beacon

Independent, up-to-date news and information for the multiple myeloma community.
Home page Deutsche Artikel Artículos Españoles

Forums

General questions and discussion about multiple myeloma (i.e., symptoms, lab results, news, etc.) If unsure where to post, use this discussion area.

MGUS/SMM - Stiff Man Syndrome

by curious on Sun Mar 24, 2013 7:21 pm

Is any one aware of studies or connections related to MGUS - SMM and Stiff Man Syndrome?
thank you

curious

Re: MGUS/SMM - Stiff Man Syndrome

by Dr. Jason Valent on Mon Mar 25, 2013 4:40 pm

You are probably not going to find studies but there are reported associations between circulating antibodies and stiff man syndrome.
Dr. Jason Valent
Cleveland Clinic

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Jason Valent
Name: Jason Valent, M.D.
Beacon Medical Advisor

Re: MGUS/SMM - Stiff Man Syndrome

by curious on Mon Mar 25, 2013 7:58 pm

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?

curious

Re: MGUS/SMM - Stiff Man Syndrome

by JimNY on Mon Mar 25, 2013 10:30 pm

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.

JimNY

Re: MGUS/SMM - Stiff Man Syndrome

by curious on Tue Mar 26, 2013 8:54 pm

Yes very rare Jim. I have three neurologists involved in this right now. Thanks for the response.

curious

Re: MGUS/SMM - Stiff Man Syndrome

by molinjo1 on Sat Aug 31, 2013 3:15 pm

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.

molinjo1

Re: MGUS/SMM - Stiff Man Syndrome

by MoLinJo on Fri Sep 06, 2013 8:41 pm

Dr. Jason Valent wrote:
> 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 (eg he gets IVIG, Velcade, Dex and Revlimid right now).....

MoLinJo
Name: MoLinJo
When were you/they diagnosed?: Early 2011
Age at diagnosis: 54

Re: MGUS/SMM - Stiff Man Syndrome

by MoLinJo on Fri Sep 06, 2013 8:42 pm

curious wrote:
> 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 before except for one dr at Yale has seen about 10 patients in his lifetime. But it was Dr Katz who found the condition, not Yale.

MoLinJo
Name: MoLinJo
When were you/they diagnosed?: Early 2011
Age at diagnosis: 54

Re: MGUS/SMM - Stiff Man Syndrome

by Dr. Ken Shain on Sat Sep 07, 2013 2:42 pm

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 Rev as it can induce immune mediated/inflammatory responses. From my understanding (very little) SPS is mediated by an autoimmune issue (anti- GAD antibodies).

These are the only two articles that I found regarding SPS and myeloma:

Stiff-person syndrome associated with multiple myeloma following autologous bone marrow transplantation.
Clow EC, Couban S, Grant IA.
Muscle Nerve. 2008 Dec;38(6):1649-52. doi: 10.1002/mus.21153.
http://onlinelibrary.wiley.com/doi/10.1002/mus.21153/abstract

Anti-GAD antibody positive stiff-limb syndrome in multiple myeloma.
Schiff D, Dalmau J, Myers DJ.
J Neurooncol. 2003 Nov;65(2):173-5.
http://link.springer.com/content/pdf/10.1023/B:NEON.0000003754.34527.f2.pdf
Dr. Ken Shain
H. Lee Moffitt Cancer Center & Research Institute

Any advice provided in these postings is based on a very limited amount of information. There is no substitute for the care of your oncologist/hematologist. Therefore, all suggestions should be discussed with your treating physician. None of the comments presented here are meant to replace the evaluation of a patient by a knowledgeable physician.


Dr. Ken Shain
Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor

Re: MGUS/SMM - Stiff Man Syndrome

by MoLinJo on Fri Oct 04, 2013 7:41 pm

Thank you for the point about rev. 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 alot 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.

MoLinJo
Name: MoLinJo
When were you/they diagnosed?: Early 2011
Age at diagnosis: 54


Return to Multiple Myeloma