Discussions By Condition: Medical Stories

Stiff Persons Syndrome

Posted In: Medical Stories 3 Replies
  • Posted By: Anonymous
  • November 1, 2009
  • 01:01 PM

I had cervical neck fusion last November. The surgery was a success but the nerve pain was a 10. I went on Gabapentin to calm that down. In Feb of 09 my low back pain was so bad I could no longer concentrate on anything but that. I went to a primary care Dr. and he thought it was a disc problem. Physical therapy made it worse. An MRI only showed minor arthritic changes. I had started having numbness in my R inner thigh. My surgeon sent me down for a caudal epidural which was horrible because my nerves must have been hypersensitive. A CT of the abdomen was unremarkable and an internal medicine Dr. examined me and said I had wide spread numbness. He sent me to Neurology the same day. After an EMG I as admitted to the hospital for quick testing of MRI's with contrast of the entire back and brain. Tons of blood work and everything was negative. I also lost feeling inside the lower region of my body. A few months later and a big increase in the gabapentin only led to strong negative reactions to the med (walking backwards, not remembering anything, falling etc...). At this point my neurologist said I had muscle weakness. I thought he was teasing but an EMG showed differently. 2 more hospital stays and I am finally to the point of a temporary diagnosis. My Neuro doc had been looking for paraneoplastic but no cancer has been found. He sent me to a specialist at Washington University who did blood work and it came back with protein in the IGG but not sure which one or the amount. During this time my cranial nerves were affected and the left side of my mouth would no longer move without valium. I have now built up a resistance to that and it only works about 20% of the time. My Neurologist had also thought I had stiff persons syndrome during my second hospital stay. I was treated with lots of IV steroids. That only made me incontinent 3 times and have a bad case of thrush. The Dr. in St. Louis said he didn't think that was it. A month after that visit my left leg became almost totally paralysed. The pain in my legs makes me crazy and my lumbar and hip region hurt constantly. I developed joint pain in my L arm and the muscles would hurt so bad I didn't want to move my arm away from my body. A Rheumatologist put me on 20 mg of prednisone a day and my valium was upped to 10 mg bid and 20 mg at bedtime. Ater 3 days there was a big difference in my pain level. I could even lift my left leg about an inch off the ground. Then the Rheumatologist said I showed no signs of that disease so he took me back down to 10 mg of prednisone a day. I saw my Neuro doc the next day and he told me about the protein in my blood test. He had me walk several times and my legs are stiff but he watched the muscles in my back become rigid after even 5 steps. He says he doesn't think I have the typical symptoms of stiff persons syndrome but this is what he thinks it is. I am stumbling a lot now and have to shuffle my feet to move. I am starting to get muscle spasms in the roof of my mouth in the center. 4 times I have also had a weird thing with my eyes when I wake up. It is like a strobe light (the round kind) in the middle of a ball room but not shiny. Mine is just gray and has 4 different layers I think. They are half moon shaped and when I first wake up the 4 levels spin in different directions. I just lay there until it stops and then it goes away and I am fine. My concern is the progression of this syndrome and it doesn't seem to be slowing down. I know there are different drugs that can be tried to help with the pain but I am never sure if I should call the Dr's office and tell them of the new developments or just ride it out.

Reply Flag this Discussion

3 Replies:

  • Research chronic Lyme.
    kermworm 81 Replies
    • November 5, 2009
    • 05:23 PM
    • 0
    Flag this Response
  • I had cervical neck fusion last November. The surgery was a success but the nerve pain was a 10. I went on Gabapentin to calm that down. In Feb of 09 my low back pain was so bad I could no longer concentrate on anything but that. I went to a primary care Dr. and he thought it was a disc problem. Physical therapy made it worse. An MRI only showed minor arthritic changes. I had started having numbness in my R inner thigh. My surgeon sent me down for a caudal epidural which was horrible because my nerves must have been hypersensitive. A CT of the abdomen was unremarkable and an internal medicine Dr. examined me and said I had wide spread numbness. He sent me to Neurology the same day. After an EMG I as admitted to the hospital for quick testing of MRI's with contrast of the entire back and brain. Tons of blood work and everything was negative. I also lost feeling inside the lower region of my body. A few months later and a big increase in the gabapentin only led to strong negative reactions to the med (walking backwards, not remembering anything, falling etc...). At this point my neurologist said I had muscle weakness. I thought he was teasing but an EMG showed differently. 2 more hospital stays and I am finally to the point of a temporary diagnosis. My Neuro doc had been looking for paraneoplastic but no cancer has been found. He sent me to a specialist at Washington University who did blood work and it came back with protein in the IGG but not sure which one or the amount. During this time my cranial nerves were affected and the left side of my mouth would no longer move without valium. I have now built up a resistance to that and it only works about 20% of the time. My Neurologist had also thought I had stiff persons syndrome during my second hospital stay. I was treated with lots of IV steroids. That only made me incontinent 3 times and have a bad case of thrush. The Dr. in St. Louis said he didn't think that was it. A month after that visit my left leg became almost totally paralysed. The pain in my legs makes me crazy and my lumbar and hip region hurt constantly. I developed joint pain in my L arm and the muscles would hurt so bad I didn't want to move my arm away from my body. A Rheumatologist put me on 20 mg of prednisone a day and my valium was upped to 10 mg bid and 20 mg at bedtime. Ater 3 days there was a big difference in my pain level. I could even lift my left leg about an inch off the ground. Then the Rheumatologist said I showed no signs of that disease so he took me back down to 10 mg of prednisone a day. I saw my Neuro doc the next day and he told me about the protein in my blood test. He had me walk several times and my legs are stiff but he watched the muscles in my back become rigid after even 5 steps. He says he doesn't think I have the typical symptoms of stiff persons syndrome but this is what he thinks it is. I am stumbling a lot now and have to shuffle my feet to move. I am starting to get muscle spasms in the roof of my mouth in the center. 4 times I have also had a weird thing with my eyes when I wake up. It is like a strobe light (the round kind) in the middle of a ball room but not shiny. Mine is just gray and has 4 different layers I think. They are half moon shaped and when I first wake up the 4 levels spin in different directions. I just lay there until it stops and then it goes away and I am fine. My concern is the progression of this syndrome and it doesn't seem to be slowing down. I know there are different drugs that can be tried to help with the pain but I am never sure if I should call the Dr's office and tell them of the new developments or just ride it out. Hi Debw, My Neuro doc had been looking for paraneoplastic but no cancer has been found There is an antibody test that may still be experimental for paraneoplastic syndrome which can cause certain sorts of neurological deterioration. Paraneoplastic syndrome does all it's damage quickly and then is non-progressive as a characteristic. B12 deficiencies are progressive and you have many symptoms of that. I would like to offer the possiblity that you may have a one or more forms of b12 deficiency. Read the basics and look at the symptoms at http://forums.wrongdiagnosis.com/showthread.php?t=62327 and then come over to discuss it at http://forums.wrongdiagnosis.com/showthread.php?p=203488#post203488. If it is a b12 deficiency, a trial with both active forms of b12 and certain other nutrients can determine that and start having results within days. The tests can't tell you definitively. Read up and then let's talk.
    Freddd 3576 Replies
    • November 7, 2009
    • 08:36 PM
    • 0
    Flag this Response
  • hi deb, I am also in st louis and having some similar issues with numbness and the like. I have ehlers danlos syndrome... I was wondering if you could email me the info on the doc' you saw? I am on yahoo as stormygirl1983@yahoo.com thanks!
    Anonymous 42789 Replies
    • November 9, 2009
    • 09:11 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.