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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Diagnosed with stiff man syndrome?

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Unread 01-19-2013, 11:03 PM   #1
debbiehub
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Default Diagnosed with stiff man syndrome?

Due to my full body muscle dystrophy, my neuro doc has done extensive bloodwork. The only thing to come back abnormal was ga65 which is an indicator for stiff man (I am stiff but not sure if this is correct) so the tx he wants to do is an iv of retuxemb..we already tried ivig. Just not sure what to do...


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Unread 01-20-2013, 02:39 PM   #2
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Debbie

The best thing you can do is go with the proposed treatment. There isn't a cure for Stiff Person Syndrome or the variant Stiff Limb Syndrome and there is no clarity about the cause. It looks as though they may have multiple causes. The treatment they have suggested has shown some good results for long term symptom control/management. So have long term, large doses of muscle relaxants ,IVIG which you have had and some of the usual drugs like gabapentin and anti anxiety drugs. Specialist physio can make a massive difference to some people. To some extent it depends which stage of the disease you are in. Ultimately everything they do is about slowing progression to try and minimise the severity of the symptoms as long as possible. For many people the drugs give them good long term symptom control and halt any progression for a long time.

My neurologist believed I had SPS but then changed his mind. Oddly enough, I have an acquaintance who was diagnosed with it at the same time as I was told they didn't think I had it. It's a crappy diagnosis to get but if its what you have then at least you know and can start to move forward.

Good luck with the treatment.
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Unread 01-20-2013, 11:20 PM   #3
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Quote:
Originally Posted by Neurochic View Post
Debbie

The best thing you can do is go with the proposed treatment. There isn't a cure for Stiff Person Syndrome or the variant Stiff Limb Syndrome and there is no clarity about the cause. It looks as though they may have multiple causes. The treatment they have suggested has shown some good results for long term symptom control/management. So have long term, large doses of muscle relaxants ,IVIG which you have had and some of the usual drugs like gabapentin and anti anxiety drugs. Specialist physio can make a massive difference to some people. To some extent it depends which stage of the disease you are in. Ultimately everything they do is about slowing progression to try and minimise the severity of the symptoms as long as possible. For many people the drugs give them good long term symptom control and halt any progression for a long time.



My neurologist believed I had SPS but then changed his mind. Oddly enough, I have an acquaintance who was diagnosed with it at the same time as I was told they didn't think I had it. It's a crappy diagnosis to get but if its what you have then at least you know and can start to move forward.

Good luck with the treatment.

Thanks for your response. Guess I am. Unsure about the diagnosis, my biggest problem is muscle atrophy, but my back and neck r very stiff, at
This point. I have to try something to stay in the game..my body is wasting away ..I truly believe it is all just spread of the rsd (atypical)

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Unread 01-21-2013, 03:14 AM   #4
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Debbie

Why are you so doubtful about the diagnosis of SPS? Is is because you don't want to have yet another crappy diagnosis? Is it that you don't think much of the doctor who diagnosed you? Is it perhaps fear? Is it that you don't think you meet the profile for SPS?

Any of these would be more than understandable. I just wonder why you are not inclined to believe them in this new diagnosis. How sure have they said that they are about the diagnosis? Could you perhaps ask them to sit with you and explain slowly why they have come to the diagnosis and exactly how sure they are. If you thing they are just lost and this is clutching at straws then I could see why you are reluctant to take more treatments.

There is some decent information out there on the web about SPS although its very rare and poorly understood so you can imagine what that means! If there is anything else I can do to help then please just ask me. I had a clueless neurologist so I always am concerned that my SPS rule-out could have been incorrect. I share a lot of the SPS symptoms hence why they suspected it but they weren't able to do a lumbar puncture due to my movement problems so that meant they could never do all of the necessary tests.
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Unread 01-21-2013, 09:14 AM   #5
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the only reason he said stiff man is because of an elevated GAD 65 and of course some of my symptoms. I guess I am unclear if an elevated gad 65 definitely confirms stiff man because I had that in previous blood work and he said i may have stiff man....i hope it is sms as then there is a possible tx.

Thanks for your support

Debbie
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Unread 01-21-2013, 10:31 AM   #6
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It all seems a bit unclear as to whether there is certainty about the diagnosis or not. Maybe you could try and get them to establish once and for all how certain they are or whether there is anything else they think it could be.

I don't think I would be hoping it was SPS though - I know it feels good to have answers rather than having no clarity about what is wrong but SPS is a pretty nightmarish diagnosis and the treatment options are very limited. In the later stages, there is no effective treatment, care is palliative and it can progress to cause death. You just have to hope you don't progress and the symptom controlling medication is effective for you.

I'm not trying to be the merchant of doom, just honest. Having researched SPS because I was thought to have it, I know how bad it can be. They never confirmed what tests they did on me and the neurologist was clueless so there is a slim chance I could be living with it and not even know! I'm not into giving out sugar coated platitudes but I do sincerely hope that you get an improvement from the latest treatment they are offering. There is some decent info on the web about SPS and you might find it is helpful to do some reading so that you know what other potential medications could help.
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Unread 01-24-2013, 08:16 PM   #7
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Quote:
Originally Posted by Neurochic View Post
It all seems a bit unclear as to whether there is certainty about the diagnosis or not. Maybe you could try and get them to establish once and for all how certain they are or whether there is anything else they think it could be.

I don't think I would be hoping it was SPS though - I know it feels good to have answers rather than having no clarity about what is wrong but SPS is a pretty nightmarish diagnosis and the treatment options are very limited. In the later stages, there is no effective treatment, care is palliative and it can progress to cause death. You just have to hope you don't progress and the symptom controlling medication is effective for you.

I'm not trying to be the merchant of doom, just honest. Having researched SPS because I was thought to have it, I know how bad it can be. They never confirmed what tests they did on me and the neurologist was clueless so there is

a slim chance I could be living with it and not even know! I'm not into giving out sugar coated platitudes but I do sincerely hope that you get an improvement from the latest treatment they are offering. There is some decent info on the web about SPS and you might find it is helpful to do some reading so that you know what other potential medications could help.
I just had blood work to r,o diabetis as the cause of my elevated gad65. If I don't have DM then I will feel more confident trying iv retuxenb

Ty
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Unread 01-25-2013, 09:20 AM   #8
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Default GAD65, cause or effect?

Dear Debbie -

Understand that concern about the GAD65 in your blood-work. But I necessarily jump to wouldn't jump to any conclusions over it, especially where to the best of my understanding, the only standard/generally-accepted treatments for Stiff Man/Person Syndrome (hereinafter SPS) are are essentially palliative therapies, and I've been on two of the biggies for years in an attempt to deal with the spasms associated with CRPS: (1) CNS-focused muscle relaxants, e.g., Balcofen, and (2) benzodiazepines such as Xanax.

And here's the deal, as recently as 2008, articles were being published to the effect that "Analysis by LIPS of 40 sera samples from SPS and control subjects for anti-GAD65 antibodies revealed dramatic titer differences allowing diagnosis of SPS with 100% sensitivity and 100% specificity." High definition profiling of autoantibodies to glutamic acid decarboxylases GAD65/GAD67 in stiff-person syndrome, Burbelo PD, Groot S, Dalakas MC, Iadarola MJ, Biochem Biophys Res Commun. 2008 Feb 1;366(1):1-7.

But now we know that anti-GAD65 antibodies are found in a number of conditions, on account of which any claim of "100% specificity" of a diagnosis of SPS. See, e.g., GAD65 autoantibodies and its role as biomarker of Type 1 diabetes and Latent Autoimmune Diabetes in Adults (LADA), Towns R, Pietropaolo M, Drugs Future. 2011 Nov;36(11):847 [I missed the reference to being tested for diabetes at the end of your last post - sorry]; AND GAD65 Positive Autoimmune Limbic Encephalitis: A Case Report and Review of Literature, Sharma A, Dubey D, Sawhney A, Janga K, J Clin Med Res. 2012 Dec;4(6):424-8.

Indeed, there has also been discussion is recent literature suggesting that earlier research may have inverted the causation altogether, on account of which increased levels of GAD65 may be the result and not the cause of neuro-ischemic pain and spasticity conditions in general. Compare,
Epigenetic suppression of GAD65 expression mediates persistent pain, Zhang Z, Cai YQ, Zou F, Bie B, Pan ZZ, Nature Medicine 2011 Oct 9;17(11):1448-55, with, Combinational spinal GAD65 gene delivery and systemic GABA-mimetic treatment for modulation of spasticity, Kakinohana O, Hefferan MP, Miyanohara A, Nejime T, Marsala S, Juhas S, Juhasova J, Motlik J, Kucharova K, Strnadel J, Platoshyn O, Lazar P, Galik J, Vinay L, Marsala M, PLoS One Epub 2012 Jan 23.

And, for a general statement of that proposition - which I would encourage you to share with your doctors, see, Calpain cleavage of brain glutamic acid decarboxylase 65 is pathological and impairs GABA neurotransmission, Buddhala C, Suarez M, Modi J, Prentice H, Ma Z, Tao R, Wu JY, PLoS One Epub 2012 Mar 12.

But lets make this easy. Check out the Wikipedia article on Stiff person syndrome . Here's what it list as the symptoms:
People with stiff person syndrome tends to present in 3 different stages: early, late and end stage. In the early stages, there are few objective findings indicating SPS during the initial assessment. SPS will begin insidiously in the axial muscles. Patients will present with an exaggerated upright posture and have stiffness and pain in the whole back. Sleep disturbances are also common due to muscle spasms waking them. In the late stages, proximal limb muscle become involved and the patient tends to move slower as fast movements will cause the severe spasms. Emotions such as anger have been shown to have a link to causing the spasms, which begin in this stage. Exaggerated lumbar lordosis becomes more evident in the patients. Depression can be comorbid with SPS at this stage due to the patient’s quality of life decreasing. In the end stage, activities of daily living such as eating and simple movements become hard to perform. Skeletal fractures and muscle ruptures occur quite often along with joint deformities. [Footnotes omitted.]
Funny, but I don't see a lot of references to disproportionate and/or burning pain, edema, discoloration, skin temperature changes across the body, etc.

Debbie - You and I have been on these forums for a long time. And I can pretend I recall every post you've put up along the way, but I have to think that a number of your complaints had nothing to do with SPS. IF AND ONLY IF that is the case, then I suspect it's probably more appropriate to consider your elevated levels of GAD65 as the EFFECT if your pain, spasm and rigidity, rather than the other way around.

I hope this is useful.

Mike
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Last edited by fmichael; 01-25-2013 at 08:45 PM. Reason: non-typo corrections in bold blue - initial version submitted not early in AM but WAY TOO LATE AT NIGHT
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Unread 01-25-2013, 05:08 PM   #9
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Quote:
Originally Posted by fmichael View Post
Dear Debbie -

Understand that concern about the GAD65 in your blood-work. But I necessarily jump to wouldn't jump to any conclusions over it, especially where the I only understanding that there are only palliative therapies for Stiff Man/Person Syndrome (hereinafter SPS), and I've been on two of the biggies for yours for the spasms associated with CRPS: (1) CNS-focused muscle relaxants, e.g., Balcofen, and (2) benzodiazepines such as Xanax.

And here's the deal, as recently as 2008, articles were being published to the effect that "Analysis by LIPS of 40 sera samples from SPS and control subjects for anti-GAD65 antibodies revealed dramatic titer differences allowing diagnosis of SPS with 100% sensitivity and 100% specificity." High definition profiling of autoantibodies to glutamic acid decarboxylases GAD65/GAD67 in stiff-person syndrome, Burbelo PD, Groot S, Dalakas MC, Iadarola MJ, Biochem Biophys Res Commun. 2008 Feb 1;366(1):1-7.

But now we know that anti-GAD65 antibodies are found in a number of conditions, on account of which any claim of "100% specificity" of a diagnosis of SPS. See, e.g., URL="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3411186/"]GAD65 autoantibodies and its role as biomarker of Type 1 diabetes and Latent Autoimmune Diabetes in Adults (LADA)[/url], Towns R, Pietropaolo M, Drugs Future. 2011 Nov;36(11):847; AND GAD65 Positive Autoimmune Limbic Encephalitis: A Case Report and Review of Literature, Sharma A, Dubey D, Sawhney A, Janga K, J Clin Med Res. 2012 Dec;4(6):424-8.

Indeed, there has also been discussion is recent literature suggesting that earlier research may have inverted the causalities altogether, on account of which increased levels of GAD65 may be the result and not the cause of neuro-ischemic pain and spasticity conditions in general. Compare,
Epigenetic suppression of GAD65 expression mediates persistent pain, Zhang Z, Cai YQ, Zou F, Bie B, Pan ZZ, Nature Medicine 2011 Oct 9;17(11):1448-55, with, Combinational spinal GAD65 gene delivery and systemic GABA-mimetic treatment for modulation of spasticity, Kakinohana O, Hefferan MP, Miyanohara A, Nejime T, Marsala S, Juhas S, Juhasova J, Motlik J, Kucharova K, Strnadel J, Platoshyn O, Lazar P, Galik J, Vinay L, Marsala M,
PLoS One Epub 2012 Jan 23.

And, for a general statement of that proposition - which I would encourage you to share with your doctors, see, generally, Calpain cleavage of brain glutamic acid decarboxylase 65 is pathological and impairs GABA neurotransmission, Buddhala C, Suarez M, Modi J, Prentice H, Ma Z, Tao R, Wu JY, PLoS One. Epub 2012 Mar 12.

But lets make this easy. Check out the Wikipedia article on Stiff person syndrome . Here's what it list as the symptoms:
People with stiff person syndrome tends to present in 3 different stages: early, late and end stage. In the early stages, there are few objective findings indicating SPS during the initial assessment. SPS will begin insidiously in the axial muscles. Patients will present with an exaggerated upright posture and have stiffness and pain in the whole back. Sleep disturbances are also common due to muscle spasms waking them. In the late stages, proximal limb muscle become involved and the patient tends to move slower as fast movements will cause the severe spasms. Emotions such as anger have been shown to have a link to causing the spasms, which begin in this stage. Exaggerated lumbar lordosis becomes more evident in the patients. Depression can be comorbid with SPS at this stage due to the patient’s quality of life decreasing. In the end stage, activities of daily living such as eating and simple movements become hard to perform. Skeletal fractures and muscle ruptures occur quite often along with joint deformities. [Footnotes omitted.]
Funny, but I don't see a lot of references to disproportionate and/or burning pain, edema, discoloration, skin temperature changes across the body, etc.

Debbie - You and I have been on these forums for a long time. And I can pretend I recall every post you've put up along the way, but I have to think that a number of your complaints had nothing to do with SPS. IF AND ONLY IF that is the case, then I suspect it's probably more appropriate to consider your elevated levels of GAD65 as the EFFECT if your pain, spasm and rigidity, rather than the other way around.

I hope this is useful.

Mike
Hey mike,

Thanks for your input..here's the.
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Unread 01-25-2013, 05:13 PM   #10
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[quote=debbiehub;950876]Hey mike,

Thanks for your input..here's the thing. I have full body muscle atrophy worsening each day. My legs r getting so thin and weak and arms r fatiguing quickly. So if I do have some autoimmune disease maybe the retuxemb iv will halt it,,,at the rate I'm going I have to try something....not sure what else I can do?

Ty
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