Discussions By Condition: Nerve conditions

Stiff Person's Syndrome

Posted In: Nerve conditions 7 Replies
  • Posted By: MelanieZ
  • January 30, 2007
  • 04:27 PM

My Step-dad has been dealing with a horible illness for the past three years with no diagnosis until recently, or so they think. At first, he would fall over, would get terrible leg cramps, he couldnt sleep, forgetting everything, difficulty swallowing, his feet began to swell, he was unable to urinate or deficate on his own. He has been in and out of the hospital for months and months. A once active man has been completely robbed of his life at only 53. He has been diagnosed with stiff person's syndrome. I have never heard of such a disease in all my life. Right now he is still in hospital and has been since August of 06. He can no longer walk, his feet are bent inwards and his toes are pretty much straight out. He cannot even bend them. He cries a lot. An awful lot. He has an intrathecal baclofen pump, to help with the spasms, his medications have to be monitored so carefully because the slightest one can cause problems.

My question is, what is the expectancy for someone with this disease? I know there is no cure, but how can you help them be comfortable? THe hospital he is in right now needs to transport him to a continuing care hospital in our home town, and that hospital is refusing him because they feel he is too complex for them. How can you make someone with a disease feel good? He already feels like a burden, and that no one wants him. (this clearly isn't the case) He is just not safe enough to go home right now.
If there is someone out there that knows someone with this disease, I would love to talk to you, know how you cope. I think my mom is doing pretty good right now. But everyday is a struggle for her too. She is really feeling like our health care system in Ontario, Canada is failing her. It has just been one disappointment after another.
Your thoughts or comments would be well appreciated.

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7 Replies:

  • :confused: I just talked to my step dad, and mornings seem to be better for him. He is having difficulty gaining weight though. At 6 feet 2 inches, he really looks like a skeleton on his hospital bed. Anyway, he keeps telling me the doctors are telling him that he will be in hospital for 6-12 more months at least. They haven't been doing any phsyio with him. He just lays there. To think about this disease. Please someone out there, if you have anymore information, please let me know.
    MelanieZ 5 Replies
    • January 30, 2007
    • 05:03 PM
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  • I'm so sorry. I was just tested for this. I'll find out in 3 weeks. If I have it I'll let you know.It says valium is also used for Stiffman's. I've been on it for 30 years so I don't think I have it. I do have torsion dystonia. I also have trouble chewing and swallowing. I have for at least 6 years. I have never been in a hospital for either, thank God. My father has been on a feeding tube for six years now. He is 85 and blind.I think he had Parkinson's, but was never diagnosed. It's horrible getting a disease like this before retirement.
    Anonymous 42789 Replies
    • February 4, 2007
    • 05:12 PM
    • 0
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  • My mother in law was diagnosed with this about 3 years ago. We watched her suffer terribly and lose much weight. She is slowly recovering now, albeit slightly. She has an incredible regiment of medications. She has been on a feeding tube, but is regaining her ability to eat on her own. She was 62 at the onset of this, when the spasms started. There are several physicians at Johns Hopkins in Maryland who have studied this rare disease extensively. We found them on an internet site and contacted them; they were very helpful and supportive, and my mother in law actually went there to receive some treatments. God bless and heal your father-in- law, this suffering is not of this world.
    Anonymous 42789 Replies Flag this Response
  • Hey, I have an early diagnosis of SPS, I had to go back for more blood tests that my neurologist sent to the Mayo clinic. I would like to know if there is a chat room for people with this disease? My muscle spasms are awful sometimes and the stiffness of my joints is getting worse. I would love to hear from others who have SPS.
    Braves Lover 1 Replies
    • September 27, 2007
    • 07:50 PM
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  • I am a 29 year old male and my doctor just told me that i have SMS, diagnoised me from an attach i had in his office and my MRI's definetly suggest SMS. I have been dealing with all the symptoms of SMS for quite some time now. I have not been tested yet to see if i have but after reading and diagnosing my self i am almost positive that i have this diease. It is very painful and crippling way lonely way of life. I have been trying to figure out what is causing my pain for years and doctors just keep ordering the same blood work time after time. So if anyone out there is not getting anwhere with a prognosis from a doctor, i highly reccommend going to a Neurological doctor. It is crazy what out Neurological system do and if not functioning properly the havic it can cause in out bodies and also not to mention the expence of health care these days.
    Anonymous 42789 Replies
    • September 30, 2007
    • 00:32 AM
    • 0
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  • Sorry about your problems you are really young to have to be going through this awful disease. I hope you get a definite diagnosis so they can treat you with the appropriate meds. There are some out there that can make a difference in our lives. The best to you thank you for replying to my post. Braves Lover
    Anonymous 42789 Replies
    • September 30, 2007
    • 11:22 PM
    • 0
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  • I had never heard of this syndrome until 2 weeks ago when my neurologist brought it up and sent mefor body functions, GAD and b-12 and Folic testing.Im most worried about the GAD results. I take monthlyB-12 shots and take Calcium and Magnesim supplements.These are the symptoms I am having and maybe you can tell meif these are things you experience.It all started with basic muscle cramps and burning in my toes and feet, it has progressed over the past 3 months from simple cramps and pain to unbearable pain, It wakes me up at night about 3-4 AM I am awoken by what I can only explain as two hands one on each side of my legs Mostly (lower leg and ankle but reaches all the way up to the hip and lower back area.)pushing in opposite directions and it feels like the bone could snap. I am unable to walk due to my feet and legs being rigid (toes pointed or feet drawing to the side(most Painful))It can be triggered by just pushing up on my toes or stepping up on a step stool, pointing my toes and moving my legs from side to side. Also my knees touching during sleep and even while awake.What is scaring me the most is that it is starting to interfere with my day. Ive fell a few times in the past few weeks. I get about 3 hours sleep a night iPlease if you can give any advice , it would be so helpful
    pattij 1 Replies Flag this Response
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