Stiff Man Syndrome is a rare autoimmune disease that causes spasticity and rigidity. In my case, it causes the muscles in my legs to become extremely stiff. I've tried numerous oral medications and three different types of alternative treatments.
In February of 1997 my right ankle and knee became so stiff that it was very difficult to walk. By March all the muscles in my legs and lower back were severely stiff; I could not walk unassisted--and when I did walk, it was on the balls of my feet. Because of this I had muscle spasms two or three times per week in my legs and lower back.
I saw numerous doctors, and with each the diagnosis was different. One said he didn't know what it was, but he would write acute tendonitis as the diagnosis. Another said the stiffness I was having was all psychosomatic; he suggested I see a psychologist. Dystonia was the diagnosis another doctor made, and, although he was wrong, he started me on the oral medication that I am still on today: baclofen.
Eventually, I was referred to a neurologist who ordered an anti-GAD antibody test; it showed that I had Stiff Man Syndrome. In the end, the oral baclofen was increased to 180 mg. and I was able to walk relatively well.
Because there was still some stiffness in my legs, I needed to try another treatment that would hopefully make them as loose as they were previously. In July of 1997 I received intravenous immune globulin (IVIg) for the first time.
For the next year and a half, I went through a cycle of receiving the IVIg every three months. But because the amount of IVIg one receives is based on weight, it didn't help every time as my weight increased. By May of '99 the IVIg no longer helped my knees and back so I couldn't decrease the baclofen as I had in the past.
Since the IVIg was no longer an option available to me, I tried plasmapheresis in July of '99. To my great relief, the plasmaphersis helped . . . but only for three weeks. Thus, another option was gone.
In an effort to quickly exercise my last available treatment option, I made an appointment in September to see a doctor about getting an intrathecal baclofen pump. At the end of the month, I went into the hospital for three days for a screening test to see if the baclofen pump would alleviate the stiffness in my legs. Finally, on October 7th, the pump was put in. Now, in December of '99, I am almost off the oral baclofen.
And if I had the option of doing the whole scenario over again? I would have demanded that they put the intrathecal baclofen pump in back in '97 when I first learned of it.
Below is a list of a few abstracts that better explain what Stiff Man Syndrome is, and what the treatment options are.
Abstracts Review This abstract gives a better definition of what Stiff Man Syndrome really is.
Intrathecal Baclofen Pump This one explains how the intrathecal baclofen pump can help people with SMS.
Botulinum Toxin A Explains how botulinum toxin a can alleviate the stiffness in people who have SMS.
Intrathecal Baclofen Pump Another abstract showing the use of the baclofen pump in SMS patients.
Intravenous Immune Globulin An abstract that shows that IVIg can be used to treat people with SMS.
Botulinum Toxin A Another one showing the use of Botulinum Toxin A in treating SMS.
Plasmapheresis Explains how plasmapheresis can be uses to decrease the stiffness.
