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Diagnosed with stiff man syndrome?

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Old 02-17-2013, 12:52 PM   #21
debbiehub
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Join Date: Oct 2006
Location: Long Island NY
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My Mood: Diagnosed with stiff man syndrome?
Default Hi

Quote:
Originally Posted by pattyny View Post
first of all i am new to this site. let me tell you a little bit about my story. in 2004 i started having twitching in my leg muscles, then it got worse and worse. i ended up in a wheel chair, untill i was diagnosed in 2006 with sps. a baclofen pump was in stalled in front side of my stomach with a cather around my side that hooked up to my spine. my daily dose was 658 per day. i could now walk again and do as i want.it saved my life. before with out this my body would go into spasity. my leggs would lock up to a point where the bones would almost break inside. so i know about pain. any little noise car horn anything would trigger the spasity. every two months id have to have the pump refilled. on top of the sps i got diebetes 1 from this. 1-28-13 ill be 44 years old. i live on long island, my nero is in brooklyn. in 2010 i started seeing another nero. here on the island that was supose to know about sps and baclofen pumps. boy did i find out how bad i was wrong. the reason i started seeing him was because the trip to brooklyn was too long, and all he had to do was moniter the pump. the problem started in 2-2012. im sorry anything other than that will have to be pm's. but i will ad this beware of the doc's here on long island about sps. thanks.
Hi and thanks for your input. Can u pm me the doc u saw. Also how we're u diagnosed w sps?p
Thanks

Debbie

Ps...I run a support group if u r interested
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Old 03-09-2016, 10:36 PM   #22
Acquawoman
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Default

Quote:
Originally Posted by debbiehub View Post
Hi and thanks for your input. Can u pm me the doc u saw. Also how we're u diagnosed w sps?p
Thanks

Debbie

Ps...I run a support group if u r interested
Hi, I live on Long Island and I was wondering if you still run the SPS support group. I was officially diagnosed withSPS high Gad positive in Nov. 2014.
Thanks
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Old 03-12-2016, 08:14 AM   #23
mommystime2
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Default

My pcp has done a questionable diagnosis of sps on me but still waiting on neurological appt to confirm or ro, my gad was neg tho, but can be false positive or false neg he said. The muscle spasms suck at best, currently taking baclofen 20mg 3x a day for them but not working well
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Old 03-12-2016, 09:05 PM   #24
RSD ME
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i've never heard of that syndrome so i can't offer any input on it but hope you are feeling better soon. take care.
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Old 03-13-2016, 04:23 PM   #25
mommystime2
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Default

Quote:
Originally Posted by pattyny View Post
first of all i am new to this site. let me tell you a little bit about my story. in 2004 i started having twitching in my leg muscles, then it got worse and worse. i ended up in a wheel chair, untill i was diagnosed in 2006 with sps. a baclofen pump was in stalled in front side of my stomach with a cather around my side that hooked up to my spine. my daily dose was 658 per day. i could now walk again and do as i want.it saved my life. before with out this my body would go into spasity. my leggs would lock up to a point where the bones would almost break inside. so i know about pain. any little noise car horn anything would trigger the spasity. every two months id have to have the pump refilled. on top of the sps i got diebetes 1 from this. 1-28-13 ill be 44 years old. i live on long island, my nero is in brooklyn. in 2010 i started seeing another nero. here on the island that was supose to know about sps and baclofen pumps. boy did i find out how bad i was wrong. the reason i started seeing him was because the trip to brooklyn was too long, and all he had to do was moniter the pump. the problem started in 2-2012. im sorry anything other than that will have to be pm's. but i will ad this beware of the doc's here on long island about sps. thanks.
Patty I'm interested in chatting with you about sps. If you are willing please message me thank you
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Old 08-31-2017, 09:39 PM   #26
Piglet249
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Default Stiff Person Syndrome

Quote:
Originally Posted by debbiehub View Post
Due to my full body muscle dystrophy, my neuro doc has done extensive bloodwork. The only thing to come back abnormal was ga65 which is an indicator for stiff man (I am stiff but not sure if this is correct) so the tx he wants to do is an iv of retuxemb..we already tried ivig. Just not sure what to do...


Thoughts?
First off, wanted to tell you that the proper name for this disease is stiff person syndrome, not stiff man disease. I am female as are many ppl who have this disease. It was once called stiff man but it was changed bc of this.
If your doc is calling it stiff man disease, that suggests to me he may not be very knowledgeable of it. I was diagnosed by a spinal tap. If I were you, I would kindly ask your doctor if he has ever treated this disease this before bc it is very rare, very serious and you need an experienced doctor. I had the blood test and it came back a weak positive, not to mention the symptoms I'd been having. But I'd never heard of this disease before. I also got a second opinion but it wasn't for lack of not believing the first doctor who diagnosed me with it.
Before I went on a med like the one you mentioned, I would want to be 100% sure I had it and the best way to do this is to have a spinal tap. But SPS doesn't generally start with full body muscle symptoms, unless you've had it for years and I would think it would have been diagnosed before it reached that level of severity. . There are a lot of diseases that that could be but then again if you have the GAD65 antibodies, that is usually an indicator of SPS.
I'm not sure what you mean when you say you tried IVIG and it "didn't work". IVIG is used mainly to slow the progression down and it is highly unlikely that you would (or a doctor) be able to tell if it is working or not for a very long time.
There are also several diseases that might show up in a spinal tap that may not in labs. But if this doctor is experienced treating this, then you need to get busy treating it! It will progress and believe me, you do NOT want it to. I know from experience that it is very painful and takes so much from your life that you want to find a treatment that works and asap. I'm not your doctor or a doctor so if he seems to know what he is doing then do what he thinks you should. I wouldn't stick with him if he has never treated it before. The doctor that found mine had to refer me to a doctor that had more experience with it. He told me that and I know he was doing what was best for me.
Good luck. I can't tell how old this post is so if you've already resolved all of this, sorry and the best to you.
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Old 08-03-2019, 08:57 PM   #27
susan_mela
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Default Hear me out on this SPS question, please

If you are still connected to this post, I feel SO MUCH for you with this diagnosis. I am writing because I tested a low positive for the GAD65 antibody, am already on IVIG for Myasthenia Gravis, and supposedly because of this have a crazy IGG ratio. I was referred to the SPS Clinic at Hopkins, because I have been having terrible, increasing spasms for over a year now. Of course Hopkin knows their stuff, but your case here perked my interest. Were you diagnosed by spinal tap? Everything else other than GAD in blood and IGG, and IGG ratio in spinal fluid looks great, yet I have maxed out my baclofen dosage, and the later I get in my IVIG cycle, the worse the spasms are. This IGG stuff has been blamed on Myasthenia Gravis. Does any of this sound alarming to you? All my best wishes that you are able to get some relief.


Quote:
Originally Posted by Piglet249 View Post
First off, wanted to tell you that the proper name for this disease is stiff person syndrome, not stiff man disease. I am female as are many ppl who have this disease. It was once called stiff man but it was changed bc of this.
If your doc is calling it stiff man disease, that suggests to me he may not be very knowledgeable of it. I was diagnosed by a spinal tap. If I were you, I would kindly ask your doctor if he has ever treated this disease this before bc it is very rare, very serious and you need an experienced doctor. I had the blood test and it came back a weak positive, not to mention the symptoms I'd been having. But I'd never heard of this disease before. I also got a second opinion but it wasn't for lack of not believing the first doctor who diagnosed me with it.
Before I went on a med like the one you mentioned, I would want to be 100% sure I had it and the best way to do this is to have a spinal tap. But SPS doesn't generally start with full body muscle symptoms, unless you've had it for years and I would think it would have been diagnosed before it reached that level of severity. . There are a lot of diseases that that could be but then again if you have the GAD65 antibodies, that is usually an indicator of SPS.
I'm not sure what you mean when you say you tried IVIG and it "didn't work". IVIG is used mainly to slow the progression down and it is highly unlikely that you would (or a doctor) be able to tell if it is working or not for a very long time.
There are also several diseases that might show up in a spinal tap that may not in labs. But if this doctor is experienced treating this, then you need to get busy treating it! It will progress and believe me, you do NOT want it to. I know from experience that it is very painful and takes so much from your life that you want to find a treatment that works and asap. I'm not your doctor or a doctor so if he seems to know what he is doing then do what he thinks you should. I wouldn't stick with him if he has never treated it before. The doctor that found mine had to refer me to a doctor that had more experience with it. He told me that and I know he was doing what was best for me.
Good luck. I can't tell how old this post is so if you've already resolved all of this, sorry and the best to you.
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