Dystonia - Stiff-Man Syndrome - IVIg
My first Dystonia was Writer's Cramp. Then, when I started having severe spasms and pain in my lower back my Neurologist changed my Dx to Idiopathic Generalized Torsion Dystonia, increased my Valium to 30mg/day, added Baclofen up to 30mg/day, and briefly tried Sinemet. The Sinemet did not help. The Baclofen put me to sleep. But the Valium seemed to help. I got Botox a few times for my hand, but it weakened the arm too much to do my job.
From 2003 until 2007, I "accepted" my condition. After all, there is no cure for Dystonia.
Mid-2007 I started having storms that caused nearly every muscle in my body to seize. By October of the same year I was disabled, and could not safely walk. I started on SSDI in April, 2008. My Movement Disorder Neurologist said he could not treat the Dystonia until spasticity in my lower back was under control; then he would consider DBS. He referred me to Pain Management.
That approval from insurance took 8 months. Then I was evaluated twice for Intrathecal Baclofen, and in January, 2009 I had surgery to install the Medtronic Baclofen Pump. After a few months of titration, my storms were virtually non-existent. I could still not walk, but was confident I would soon.
But then, in April 2009, I developed horrific spasms in the pectoral muscles, which had me in the ER twice in three days as no doctor would see me for "chest pain". In the ER I was given IV Valium, Ativan, and Dilaudid, and sent home after several hours. ER personnel tried to get in touch with my Pain Management doctor both times, and got no response. Eventually a rotor and dye test was done of my pump, which showed the pump and catheter were okay. MRI and CT scans of back and brain were fine. Dilaudid was added to my pump but did not work. Pain Management said I needed to get back to my Neurologist.
Two neurologists that "specialized" in movement disorders did not know what to do. Third gave me Botox injections in the Cervical region of my back and the front of my neck. By now I was having extreme pain in the shoulder area and half way down my back. The Botox had little or no effect.
I moved to Tampa Bay,FL from Las Vegas, because I thought the doctors were just horrible in Vegas. Here, I got in to see one Neurologist locally while I awaited an appointment with a MDS at USF Neurology. This doctor told me I had Post Traumatic Stress Disorder. He then hit me on my shoulders, which almost cost him his life! I have not been back.
Finally, in March, 2010, I got in at USF. I was immediately tested for Stiff-Man Syndrome, and other labs were requested for Autoimmune disorders.
GAD-65 Antibody (test for SMS) was elevated by 2.6 - NEW DIAGNOSIS - Stiff-Man Syndrome.
Treatment options (again, no cure) included high doses of Valium (up to 100mg/day), Intrathecal Baclofen, Anti-seizure medicine, and IVIg Infusion Therapy. My insurance approved home health to do the infusion. I will be getting a call today to schedule the first (5-day) infusion of IVIg. I also must go to a Rheumatologist, to determine if I have other Autoimmune disorders. If the infusion proves to be effective, I will receive these infusions in a maintenance dose every 2 - 5 weeks, for life.
I tell you this story because I hope that it may help at least one person who is suffering as I have for so long.
These are the lab results that made the doctor steer away from Neurological to Autoimmune. Although, SMS is still considered a Neurological Disorder, the few studies done of it point to it being an Autoimmune Disorder.
From 2003 until 2007, I "accepted" my condition. After all, there is no cure for Dystonia.
Mid-2007 I started having storms that caused nearly every muscle in my body to seize. By October of the same year I was disabled, and could not safely walk. I started on SSDI in April, 2008. My Movement Disorder Neurologist said he could not treat the Dystonia until spasticity in my lower back was under control; then he would consider DBS. He referred me to Pain Management.
That approval from insurance took 8 months. Then I was evaluated twice for Intrathecal Baclofen, and in January, 2009 I had surgery to install the Medtronic Baclofen Pump. After a few months of titration, my storms were virtually non-existent. I could still not walk, but was confident I would soon.
But then, in April 2009, I developed horrific spasms in the pectoral muscles, which had me in the ER twice in three days as no doctor would see me for "chest pain". In the ER I was given IV Valium, Ativan, and Dilaudid, and sent home after several hours. ER personnel tried to get in touch with my Pain Management doctor both times, and got no response. Eventually a rotor and dye test was done of my pump, which showed the pump and catheter were okay. MRI and CT scans of back and brain were fine. Dilaudid was added to my pump but did not work. Pain Management said I needed to get back to my Neurologist.
Two neurologists that "specialized" in movement disorders did not know what to do. Third gave me Botox injections in the Cervical region of my back and the front of my neck. By now I was having extreme pain in the shoulder area and half way down my back. The Botox had little or no effect.
I moved to Tampa Bay,FL from Las Vegas, because I thought the doctors were just horrible in Vegas. Here, I got in to see one Neurologist locally while I awaited an appointment with a MDS at USF Neurology. This doctor told me I had Post Traumatic Stress Disorder. He then hit me on my shoulders, which almost cost him his life! I have not been back.
Finally, in March, 2010, I got in at USF. I was immediately tested for Stiff-Man Syndrome, and other labs were requested for Autoimmune disorders.
GAD-65 Antibody (test for SMS) was elevated by 2.6 - NEW DIAGNOSIS - Stiff-Man Syndrome.
Treatment options (again, no cure) included high doses of Valium (up to 100mg/day), Intrathecal Baclofen, Anti-seizure medicine, and IVIg Infusion Therapy. My insurance approved home health to do the infusion. I will be getting a call today to schedule the first (5-day) infusion of IVIg. I also must go to a Rheumatologist, to determine if I have other Autoimmune disorders. If the infusion proves to be effective, I will receive these infusions in a maintenance dose every 2 - 5 weeks, for life.
I tell you this story because I hope that it may help at least one person who is suffering as I have for so long.
These are the lab results that made the doctor steer away from Neurological to Autoimmune. Although, SMS is still considered a Neurological Disorder, the few studies done of it point to it being an Autoimmune Disorder.
- GAD-65 Antibody
- Anti-Nuclear Antibody (ANA)
- Antiphospholipid Panel
- Antithrombin III Panel
- Protein C & S Panel
- Factor V (Leiden)
- Rheumatoid Factor
- Homocysteine
Sorry for the long narrative, but it may compel some to discuss this with their Neurologist. Stiff-Man Syndrome is extremely rare. And please be aware that it is also known now as Stiff Person Syndrome.
I HOPE THIS HELPS SOMEBODY, SOMEWHERE.
I will, of course, let you know how the IVIg Therapy works.
Sincerely,
C David Ericson
Zephyrhills, FL
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© 2012 Created by Susan M..
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