Discussions By Condition: Muscle conditions

Stiff-Person Syndrome

Posted In: Muscle conditions 10 Replies
  • Posted By: Anonymous
  • September 14, 2006
  • 02:25 AM

SPS is a rare progressive neurological disorder characterized by constant painful contractions and spasms of voluntary muscles, particularly the muscles of the back and upper legs. In 1956, scientists at the Mayo Clinic also coined the term stiff man syndrome, and clearly descri stiff person syndrome as a neurological disorder.

The rigidity, which is characterized by tightness and stiffness, begins slowly over several months at the axial muscles, especially the thoracic and lumbar spine, and spreads to the legs. The stiffness may worsen when the affected individual is anxious or exposed to sudden motion or noise. Affected muscles may become twisted and contracted, resulting in bone fractures in the most severe cases.

Individuals with SPS may have difficulty making sudden movements and may have a stiff-legged unsteady gait (manner of walking). The muscle contractions are usually reduced with extra rest. Eventually, persons with stiff person syndrome may develop a hunched posture (kyphosis) or a swayback (lordosis).

The cause of stiff person syndrome is unknown, however, researchers theorize that SPS may be an autoimmune disorder. An autoimmune disorder involves a malfunction of the immune system, where the body produces antibodies against its own tissues.

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  • --------------------------------------------------------------------------------Hello all,I have been searching high and low for others who have been diagnosed with SMS. I would like to know more about this disease in real life terms, as opposed to what I read on the Net.My symptoms range from ringing in the ears, sharp shooting/stabbing pains, electric painful spasms, vision disturbances, pain & Stiff ness, gait/balance problems, muscle weakness, Abnormal posture (lordosis) Hyper startle reflex and more. I was thought to have MS,lupus, and others but after several MRI's, EMG's, and the other neuro test....I was found to have elevated GAD antibodies....and given the wierd diagnosis of Stiff mans syndrome, aka Stiff persons syndrome, aka Moersch Woltman syndrome.This is thought to be an autoimmune disorder. SMS is a chronic, progressive (variable) disorder of the central nervous system having no known cause. I am currently being treated with Baclofen and Vicoden which gives me 80% relief from symptoms....IS there any one else out there who can share anything with me?
    Anonymous 42789 Replies
    • September 14, 2006
    • 00:14 PM
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  • Hello-Stiff-Person syndrome, I am seeing a neurologist who thinks I have SPS. I am suffering from severe muscle cramps in my toes, ankles, calves, front and back of thighs, stomach and back. I get at least 20-40 muscle cramps everyday. I do not have any at night. I also have back pain. Minor movement causes the cramps. I had to stop swimming as pointing my toes, exasterbates the muscle cramps. Although I do NOT have a positive GAD, my doctor wants me to start IVIG therapy after the oral medications didn't help. My insurance company won't approve this expensive therapy. I have been suffering for well over a year and just want some relief. Hoiw long have you been suffering? I see that you get 80% relief of your symtoms with oral medications. That's great. Hard to find anyone who has this syndrome.
    Anonymous 42789 Replies
    • January 6, 2007
    • 01:08 AM
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  • Hello, I have been diagnosed with SPS or SMS. I have had it for 6 years. Would be interested in talking with others who have this problem. Contact me at kenny59@frontiernet.net and we can arrange and find a site to discuss how things are affecting us and what treatments seem to work.
    Anonymous 42789 Replies Flag this Response
  • I have been recently diagnosed with sps. It began in my ankles and very distal legs in 1989. At this point I have severe spasms in my outer calves and front andback thighs. I was misdiagnosed with RLS. No meds for tht worked. I also suffer ataxia. Could this be due to the SPS? It has spread to my mid back long muscles (along spine) (sometime kidney area) and into my forearms and now upper arms. I have been on valium 10mg three times daily and Lortab 10 prn. At this point (about a year later) it doesnt seem to be much help. I see Dr again tomorrow and will talk to him about Becloven and other such muscle relaxers and also steroids (which helped once) At this point , the pain is just about unbearable. Anyone have any kind of remedy that works for them?? Let me know. Joyce
    Anonymous 42789 Replies Flag this Response
  • I AM NOT SURE HOW TO USE THIS METHOD OF WRITING OTHERS. WISH I COULD FIND A CHAT ROOM FOR THIS.I AM33YRS OLD HAVE 3 KIDS AND AM GOING CRAZY WITH THIS SPS. TODAY I GOT STUCK AT THE BEACH AND PEOPLE HAD TO COME GET ME AND MY KIDS.DR SAYS IT IS SPS BUT DOES NOT HAVE THE POSITIVE TEST RESULT. I AM ON VALIUM AND THEY SAY 2MORROW I WILL START BACLAFEN. IS THIS GOING TO PROGRESS? I HAVE BEEN HAVING SPASMS NON STOP FOR MONTHS BUT NOW MY LEGS GET SO TIHGT IA CAN NOT HELP BUT BREAK DOWN FROM THE PAIN. THAT BEGAN LAST NIGHT. IT WAS HORRIBLE. TODAY WAS PRETTY HARD,BUT I AM SCARED FOR THE NEXT EPISODE. I DON'T KNOW WHAT KIND OF RPLY OR ANSWERS I AM EXPECTING FROM ANYONE OUT THERE, BUT I GUESS JUST TO KNOW I AM NOT ALONE OR SOMETHING.THE STRESS MY FAMILY IS ENDURING FROM THE FEELING OF HELPLESSNESS IS JUST AN ADDED PRESSURE.NOT SURE HOW TO GET BACK TO THIS SIGHT CAUSE I WAS JUST SEARCHING THE WEB. MY EMAIL IS CORBELLINI5@ ADELPHIA.NET IF THAT DON'T WORK TRY CORBELLINI5@COMCAST.NET. THE CARRIER JUST CHANGED SO THE EMAIL MAY HAVE CHANGED.
    Anonymous 42789 Replies Flag this Response
  • Hey, I have been suffering from the symptoms of SPS for over a year now and no one has been able to figure out what was causing the terrible muscle spasms that are in my back, legs and now my arms. My Dr. finally sent me to a neurologist that did a bunch of tests and my blood showed anti-GAD antibodies. So I went back for another blood test and He sent it to the Mayo Clinic to see if it showed the same antibodies. But I know this is what I have because my symptoms tell me. If anyone found a chat room for people with sps would you e-mail me at tinam_328@hotmail.com
    Anonymous 42789 Replies
    • September 27, 2007
    • 04:47 PM
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  • hello, my name is tj casteel my wife and i are 21 years old my wife rebba was diagosed with stiffperson syndrome about 2 months ago she's sleeping right now because of the zanaflex she is on she spent 24 days in icu with very severe muscle spasms from the knee down and ended up on a ventilator she takes 80mg valium a day 2700mg gabapentin 6mgdexamethasone{steroid} 60mg baclofen its alot the thing that seemed to help her the most was a chemo-therapy drug called rituximab and they used botox in her legs to nub the nerve endings it has started to wear off and her symtoms are beggining to occur again maybe this is something u can tell ur doctors about i haven't experienced all of ur pains nor hers but i've seen it in her eyes i understand what all of u are going thru there is hope keep a strong faith and a good prayer life they'll find something to help eventually{i'm praying}please just don't give up her email is ucballerchic@yahoo.com she needs other people to talk to about this please feel free to email us we go back to the doctor tomorrow maybe we'll find something new god bless
    Anonymous 42789 Replies
    • September 23, 2008
    • 04:10 AM
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  • Hello and I am so glad to find this board. I have Stiff Person Syndrome. I am a 53 yr old female who up until 3yrs ago was very active (camping, hiking, traveling) and an ER nurse. I have been totally disabled for over 3 yrs now.I hope things I have learned and experiencedmay help others.Looking back I think I probably had SPS for several years. Off and on shine splints, back spasms, spasms in feet and arches, spells of what I called my "crab" walk, and unexplained falls. As a nurse I blamed it on over work and symptoms would go away with a few days of rest. When my symptoms got to the point I nor any doctor could blame it on stress or mental problems, I went to a new family Dr. who sent me straight to a neurologist. first diagnosis was MS, ruled out by MRI , then treated for Parkinson's for 2 years . I was seeing a Movement disorder specialist and kept trying to tell him the problems seemed to be my muscles. In fact, I had seen a chiropractor hoping for some pain relief and he was the one who told me my muscles were hyper active and suggested to tell my Dr. to check for muscle disease. But the doctor just ignored me and my muscles.finally, last year, after a very bad episode I went back to my family Dr. and she sent me to a new neurologist. He knew right away what it was, did the GAD titer, and I finally had a correct diagnosis.I have been told that most people with SPS are misdiagnosed for years before (or even if ever) they get a GAD titer and correct diagnosis. Stress, Anxiety, Parkinson's are the most common. Being a nurse and big on doing research, I have researched SPS as much as possible. I have found a lot of opposing information. Working with my Neurologist on symptoms related vs ones not related I have learned a lot.Related symptoms:I now have arthritis in almost all my joints, probably due to going untreated for so long and the strain of dystonic spasms on the joints. Tendinitis in elbows and thumbs. My hips are so bad I can no longer walk more then a block.My eyes are very slow to accommodate. If after reading or on the computer it can take up to a hour before my TV screen is not blurry. Eye Dr. says nothing will help with it.sleep disturbances. Rarely I sleep longer then 4 hrs. I am on C-Pap after sleep study showed my tongue blocks my air way during sleep, and abnormal cycles of sleep. Which can cause extreme sleepiness during the day. Cervical and spine dystonic spasms which force me to bend backwards. (for this I recieved immunoglubin IV therapy and have not had an attack since).Falls and ataxia I haven't had many falls since started treatment but still wouldn't be able to pass a field soberity test :( and handwriting is pretty bad. Depression both clinical and (what I call situational). Fasticulations in legs all the time. Spasms do progress I have now begun to have chest wall spasms and lower intracostal (muscles between ribs). May or May not be related:Hypoglycemia: research states diabetes as well as breast and lung cancer can accompany SPS. I have had several test ran for diabetes and all negative. But my blood sugar will drop to 40-50. Just my opinion but maybe because the muscles are using to much of my glucose??? Don't know.Essential Tremors: again just imo but maybe due to muscle weakness.Short Term Memory Loss probably not related to SPS, but again so little real research out there to really know. All research I can find have to do with medications vs causes, all symptoms, or even alternative treatments.I am now on high dose Valium (30mg 3 times a day). But I do not get the "good" feelings valium has for other people. :mad: Only controls spasms. I am on 100mg Zoloft daily and take 800 of motrin if pain gets too bad.Thats all the meds I take.I have learned the more you use a muscle the more it will spasm. Inactivity (for me) is the worst part of this.NO exercise, NO massage, NO swimming or water aerobics. Not that I don't cheat occassionally, but I prepare. I rest up for several days, as soon as I am finished with the activity I take my valium and motrin and go to bed.I have a 14 yr old still at home and two grandkids (8 & 9) and to me some things are worth the pain.While massage is a no-no, I have found that once a spasm has left a muscle I seem to have more pain. I use pressure point (trigger point) or very light myofascial massge (should be taught and done by someone familiar with SPS). Both are easy to learn by spouse or friend, and pressure point I can do myself using a baseball for my back and hard to reach areas. For me, the spasms leave knots which are either painful or make me stiff. applying pressure to the knots actually takes the pain away immediantly which is the way to know you are in right spot, but until they "pop", sometimes it takes several days, then pain and stiffness is gone. Drink a lot of water during this process since it actually can make you nausea. you are breaking loose pockets filled with lympathic fluid and blood. http://www.ehow.com/video_8591_apply-pressure-points.htmlhttp://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1572243759/ref=pd_bxgy_b_text_c/181-8875302-3419421this is the best book I have found to learn yourself.Anyone with questions or have your own info to share or wish to start up a group please email me:staley36@gmail.comI believe we need more research and education for ourselves and doctors. There is so little known and most of it Contradicts other information.
    texasannie 11 Replies
    • December 3, 2008
    • 04:15 PM
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  • Its really very interesting thread here. It is really informative. It is helpful thread.Genf20
    JeffCollins 1 Replies
    • January 20, 2009
    • 00:03 PM
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  • My doctor is convinced that I have Stiff Person Syndrome - I have another blood test this week. My walking is so bad even with a cane that he has ordered a wheel chair for me. One of my problems is that I have to work for as long as possible but I work on the 2nd floor of a building with no elevator so I have to go up & down steps every day. I hope to know more in a few days. Thanks for the information on this site.Ganana
    Anonymous 42789 Replies
    • February 16, 2009
    • 03:02 PM
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