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Stiff-Man Syndrome

keepindafaith Message
6 Nov 2008, 12:54 PM

I found this forum and I hope that maybe a few people will join and chat. I find this disease can e very isolating and hard to explain, besides the name is, honestly, hysterical! Until you experience it...well, if you are reading this you know what I mean. For me, it has affected me so that I no longer walk correctly. I have ataxia because of those little antibodies GAD65. I get the spasms at times but not as painful as some of the information I have found seems to indicate. Does anyone else have this symptom too? Keep battling!!
jmotika Message
22 Nov 2008, 03:06 AM

Dear keepindafaith After 4 years of seeing various specialists and no one finding out exactly what was causing my symptoms one doctor thinks I may have SMS. I started treatment a month ago. I have some very little improvement but I'm very skeptical cuz so many doctors have suggested MS, Parkinsons disease among other thing. I can barely walk I have to use a cane and I still fall sometimes and where I live we are now getting the s word---"snow". I never want to go out of the house and also the depression doesn't help either. And I can't really talk to my family so much about this cuz they really don't understand what I'm going through. If you know any more info on this disorder please let me know. jmotika
keepindafaith Message
22 Nov 2008, 02:05 PM

Hi jmotika, I, too, can't walk on my own, I use a rollator because I also have balance issues too. Did you get the GAD65 antibody test (although if it is negative, that does not mean you do not have SPS). I also ran the gamut of testing, etc. And the depression...well, I understand where you are coming from. I recently contacted a few people via e-mail that have SPS and it is nice to know that some of the more bizarre symptoms are shared by all of us. I am not a doctor, but I have read there are some good results with IVIg therapy in managing the disease (BUT it is VERY EXPENSIVE if your insurance won't cover it). The depression can be overwhelming, especially since the disease makes it hard for us to even go outside because the symptoms are exacerbated. I also go onto the board because they sometimes have good information about the walking issues. That may be helpful to you. As a some recent new SPS friends have pointed out to me, YOU ARE NOT ALONE. Keep the faith and keep it moving!! God Bless You!!
ganana Message
15 Feb 2009, 06:47 PM

I've gone through test after test & now have 2 more scheduled but my doctor is convinced that I have Stiff Person Syndrome. I've been using a cane for more than a year & am now ordering my wheelchair. The only good thing so far is that the doctor can treat the symptoms even though there is no cure. So the spasms, cramps & all the other things that happen to make me wonder if I'm losing my mind are better with meds than before. Just telling people the name of the disease is enough to make me laugh & laughter is one of the best medicines there is. I'll pray for each of you Ganana
ganana Message
6 Apr 2009, 12:19 AM

I received my diagnosis about 2 weeks ago - it is Stiff Person Syndrome. My cane (that I've been using for over a year) isn't helping as much as it was so I now also have a walker & a wheelchair. I'm still working & hope to be able to continue for a while. I pray that each of you are having a good day today. Ganana
ganana Message
17 Feb 2010, 06:11 PM

I'm no longer able to work as of the end of Jan. '10. On Long Term Disability & going to try for SS disability.
ccpkoblentz Message
23 Mar 2011, 08:21 PM

Hi all, I hope you still check once in a while. Ask about baclofen. I think it comes in tablets as well as intrathecal (pumped into your spine). My niece has this disease, as well as MS, and she has the aggressive form. She is in a wheelchair, and no longer on a ventilator with the IViG. She can move again. "Aunt Merry"
lancastermtn Message
21 Jul 2014, 06:26 AM

I have SPS had multiple positive GAD antibodies while already on Immine globulin therapy due to having CVID...long story. I am on diazepam along with hizentra infuse daily and they upped my dose of mycofenilate mofitile now not having severe spasm attacks that cause me to fall as much. Literally had 4 to 5 severe attacks a week then once All my doctors talked. .what a concept ... I am now starting to slow the progression down or so it seems that way. Staying positive and having a doctor that "won't give up on me" helps dramatically :)