vantec
Distinguished member
- Joined
- Dec 12, 2006
- Messages
- 108
- Reason
- Learn about ALS
- Country
- US
- State
- OH
- City
- Wakeman
I saw my Neurologist on Thursday, and I had NVC and EMG tests, the last time he did those tests was 4 months ago. They came out normal (which really surprised me), but my blood work came back with a high reading of GAD-56 AutoAntibody. The normal range is 0.0-1.5 U/mL, but mine was 10.3U/mL. The doctor said I had Moersch Woltmann Syndrome or Stiff Person Syndrome. Has anyone ever heard or know anything about it? I checked the Internet, and there is a lot of conflicting information. It doesn't sound any better than ALS. The longest anyone has ever lived with this disease after being diagnosed is 17 years. There is no cure, and the treatment is with very high doses of Valium (up to 1000mg a day!), long-term intrathecal baclofen therapy, and intravenous immunoglobulin in the hospital for up to 5 days. Only 1 in 1 million people have Stiff Person Syndrome, which means that there are only about 300 people in the US with it. How could I be so lucky?
The doctor wanted me to go right to the hospital, but I told him I wanted the test done again. The reason I asked him to do the test again was because I don't have the symptoms that Stiff Person Syndrome should have. My first symptoms started June of 2006, so I would be in the early stages of the disease, but I has some of the symptoms of the late stage of the disease. There should be an abnormal EMG, but mine was normal. I don't have an exaggerated upright posture, nor do I have severe spasms, or any kind of spasms. The spasms can be so strong that a person can break their bones. I can tell you that is not going to happen to me, because I am getting less mobile, weaker, and again, I don't have spasms. I have muscle twitching, but that is not a symptom of Stiff person syndrome. I have muscle wasting, but I don't see that being a symptom. My legs are very weak and stiff, but sleep is supposed to give relief, but it never does. My voice is very nasal now, and I sometimes choke while I am eating, and drinking water, but from what I read, that might happen near the end of your life. I've read some stories by people that have Stiff person syndrome, and they are nothing like what I am going through.
Anyway, I should get the second blood tests next week, and then they are going to want me to stay at the hospital for a week. I don't know if my insurance is going to cover all these expensive treatments. I'm wondering if I should get a second opinion?
Conrad
The doctor wanted me to go right to the hospital, but I told him I wanted the test done again. The reason I asked him to do the test again was because I don't have the symptoms that Stiff Person Syndrome should have. My first symptoms started June of 2006, so I would be in the early stages of the disease, but I has some of the symptoms of the late stage of the disease. There should be an abnormal EMG, but mine was normal. I don't have an exaggerated upright posture, nor do I have severe spasms, or any kind of spasms. The spasms can be so strong that a person can break their bones. I can tell you that is not going to happen to me, because I am getting less mobile, weaker, and again, I don't have spasms. I have muscle twitching, but that is not a symptom of Stiff person syndrome. I have muscle wasting, but I don't see that being a symptom. My legs are very weak and stiff, but sleep is supposed to give relief, but it never does. My voice is very nasal now, and I sometimes choke while I am eating, and drinking water, but from what I read, that might happen near the end of your life. I've read some stories by people that have Stiff person syndrome, and they are nothing like what I am going through.
Anyway, I should get the second blood tests next week, and then they are going to want me to stay at the hospital for a week. I don't know if my insurance is going to cover all these expensive treatments. I'm wondering if I should get a second opinion?
Conrad