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A Medical Egnima

Tinman
0 Recommendations

Hello I am looking for others with Stiff Person's Syndrome? I can't seem to connect with anything active on this topic. Is anyone out there?

Explore topics in this discussion:

Cancer Falls Baclofen Anxiety Pain Valium Dystonia Fibromyalgia Depression Stress

19 replies

SJGRAY

Hi,
I am shirley and there are a lot of us out here. Put me on your friends list. and we can talk to each other and I will help you all I can.
God bless
Shirley

screamer

There are a lot of sps sufferers on this site. I was tested for it and it was negative. I really think it is still on the table. My muscles twitch a lot and hurt a lot. Also, I scream from painful spasms. Mostly in my rib cage right side and my diaphram but they can be in my limbs as well. What exactly are your symptoms? I had a spasm in fron t of a neurologist who suggested sps. I was scheduled to have a nerve conduction test or something like that. I decided I could not endure the pain of the test. I have fibromyalgia diagnosed which is heightend pain. Good luck to you I know it is very painful.
J

fivet

I have had it for 15 years but was recently rediagnosed as SPS. Unfortunately, there is so much that's not known about it that it is difficult to diagnose. I have pain, spasms, etc., in my right leg. I also get anxious when walking so have to use a walker - my leg "forgets" to move, I stiffen due to fatigue, stress, anxiety - so I really need to use it. It's a funny disorder - I don't have the antibodies but I have the symptoms and a low dose of valium helped. I'm trying to get disability because the fatigue has gotten so that that I cannot work and keep things straight. You can add me to your friends and correspond if you'd like.

librose

My Husband has SPS...It really sucks...I am at my witts end...I love him so much and to see him in so much pain is killing me...He takes valium and perocet...It helps a little but the spasms and pain is still there...His hands hurt so bad that he is on a first name bases with Orthogel...my heart goes out to all of you in all this PAIN....

kraemer40

Hey everyone I am still trying to figure out how to put you all on my friends list. will get there one day. i am still up at 1;50 am legs twitching, pain, and stiff. I can't wait till test results come back. It will be by only the grace and blessing of GOD if it does come back positive. To the lady who wrote before about her husband i wil keep him and everyone here in my daily prayers. I know my husband can feel the pain i am going through he is always saying what can i do to help. he is the only one i complain in front of. as we are very close after 26 yrs of marriage. I am so glad i found this place to come to thanks to everyone for caring. GOD BLESS

Tinman

Thanks everyone it feels good to know I am not a freak and the only one in the world like this. I never heard of SPS until July 2008 although I have had severe symptoms since 1993, The doctors did not know about SPS and sent me to psychologists which only confirmed it was physical and I am not suffering from mental illness just mental anguish. Being diagnosed brought peace to my mind but did nothing for my symptoms.

Tinman

stevebro

Hang in there Tinman.
As Shirley and the others know, this is not something that is easily diagnosed. Fortunate, I visited a neurologist who listed SPS as one of the reasons that my right knee was stiff and I was falling over things. The description lead to my being able to get an RI and blood tests that showed elevated aGAD enzyme levels, an almost certain (but not 100%) sign of the disorder. This is a great forum for people seeking doctors and ways of coping. Add me to your friends if you'd want to.
Steve
Steve

Brown1964

Hi i have being suffering from this strange condition since 1994 and although i have being on diza, baclofen and various pain killers the spasm the twitching the pain in the back legs neck, and facial spasm are really awefull only by reallying on my creator Jehovah that i can get through each day. You can add me to your friends list as well, still don't what casues all these symptoms.

E,Brown

Tinman

Thanks every one for your responses. It is sad to me that this is something others suffer especially if you have not got a diagnosis. I am alone so there was no one to help me until I became friends with 4 people. They have helped and stood by me from when they decided I was a good person and my suffering was real. They dedicated themselves to getting me help long before I was diagnosed. They believed in me. After 15 years of being doubted and called lazy these people are precious to me. It was through their support and efforts I finally got diagnosed.

Tinman

darsay

Hello, My name is Darlene
I have just joined this group and I was looking for different disease's and came across the Stiffman's syndrome and I was once diagnosis with with in 02, but I had a hard time with the meds bacafen and valium...........
I have alot of spasms and pain in my legs. I have alot of stiffness and can't move at times.............. Croweded place's are bad for me because I can't walk at all........ I can't walk up steps, I need help. I start to walk and my body just go's into spasms and I am half bent over and I get so exhausted when that happens.............. I have been to many drs and got dystonia, Parkinsons, PTSD So I am just at my wits end with all of this.............. I just want a name and try to get a little help............. Loving life!!!!!!!!!!!!

Darlene

Tinman

Dear Darlene;

I understand your fear and anxiousness over this mystery. Remember science is proving every day just how little is known about the human brain and nervous system. Doctors are behind in learning the newest discoveries or refuse to accept them. I would take the first diagnoses of '02 and see about being re diagnosed standing by this diagnoses. It took me 12 years to get re diagnosed after a diagnoses in '94. I moved far from my original medical community to another and they decided my diagnoses of '94 was wrong. I had the possibility of cancer to PTSD or just plain nuts. It was 12 years before the real truth came out, again, matching the original one of '94 plus a new twist of Stiff Person's Syndrome which I had all along as well.
So I understand what you are going through. It is tough but hold on and fight for the right diagnosis. It is out there and likely is the first one of '02. I will talk to you about any of this if you want as I know I have dealt with many things you are. You probably doubt your own mind once in a while thinking thoughts of negativity on yourself. What's real and what is not. It is real and there is a smart, well educated doctor out there for you. Build your self confidence, believe in your senses and demand a diagnosis. Anxiety and depression are the first outward signs of Stiff Person's Syndrome and is normal for any chronic condition diagnosed or not. If you have rough things going on personally the doctors will connect this to your moods. They may well contribute to your moods but certain diseases can be responsible for our depression and anxiety to start with. I hear your call for help. I understand your need for a name. I understand. Please hang on and keep fighting. Remember doctors are not God and have to pull their pants down to poop just like us. Good Luck.
Tinman

darsay

Hello Tinman,


I am so glad that you wrote back so fast and you know how I been feeling. I feeling alot of what you said about feeling like I am making this happen to myself.. But after 9 yrs I truely know that it is not me. So this is the yr for me to fight and finally have a name for this........ I took life for granted alot.......... Never worrying about how I was going to walk into somewhere..... I feel for all people with all the different movements disorders.............. thank-you for your letter and your wonderful words.............

Darlene

Tinman

Hi Darleen; I am glad my letter helped you. I know how you feel because I faced the same thing for 12 years. I was finally diagnosed. I spent 5 years with 2 different psychiatrists who said there was no reason to see them as I had no mental illness. It still took another 2 years to get diagnosed. So no medicines or doctor supports because they did not believe the psychiatrists. They assumed I was after drugs, or a secret alcoholic because I was so thin and had strange complaints they were not familiar with. A specialist finally found what I have. I was very angry at my doctor for thinking I would lie I did not see him for over a year in 2006. I was finally diagnosed in July 2008 the doctors are much more supportive now. I know what it is like to imagine your crazy and just wanting answers. You have one , go get it back, start writing this diagnosis on your medical reports and tell the doctor's matter of fact you do have a diagnosis. Stick with it unless they prove different. It won't be easy and you have to feel equal to these medical people. They got into the human health field to help people like us too. Good luck, Darlene

Tinman

Dear screamer, I sure do know the pain of spastic attacks. They make me scream too. I was at emergency once, brought by ambulance because my body was totally twisted and I was in agony. At emergency I had a couple of screamer attacks and they all just stared at me as my legs were under a blanket. It was embarrassing and degrading. My Doctor does not know how to treat me so makes the specialist order the drugs. He will not give me a prescription as the specialist wants because he does not understand SPS. So she must write them. I have been started on an Ivg once every 4 weeks for life. If it works. So far all I got from the first treatment was a raging headache and pain all over my body. If it is that way next time I will stop it. My pain levels have been high since the treatment.
Tinman

screamer

ivg what is that. I might have had shots of that for a while and it gave me the worst migraines ever. I really would rather die than ever have another migrain like those. They were different from my normal migraines that are intolerable on a lower level. I had two gad come back normal now. Stsill spasm now allover my entire body twitches to lightening to stabbing pains. How are you doing? Es there another test?

Brown1964

Yes their is other's of us out their with SPS and it is such a difficult condition to deal with because you never know what will happen next with this condition, I have had tihs condition since 1994, and with all the running around with various Doctors, most of which have knot got a clue what this condition is never mind how to treat it, it like a mind field, or looking for a needle in a hay stack. Their is only one consultant that seems to have a bit of an idea, because the medication that he have tried in the main has work to a greater or lesser degree, but as the resurch that i have done on this condition says, that this is beyound Neurolgy because it dose not follow any neurolgical pattern. But one thing that keeps me going is knowing that their is a God whose name is Jehovah that will bring an end to all these maladies very shortly, keep smiling and look forward to that day, E.Brown

Betty-Oops

I have SPS, going on 20 years. There are others with Stiff Person Syndrome. I wish this disorder had one of those hard-to-spell names to give it the respect it is due. Stiff Person Syndrome just does not carry any serious thought.

I have experienced the pendulum swing of symptoms: from crawling on the floor in continual spasm, the whiplash full-body cracks, and injuries from SPS episodes and falls. I also receive benefit from a combination of medications and IVIg. While my symptoms are managed, they still will occasionally break through on a rampage.

There is a lot of SPS information available. Benefit depends on the variant one has and individual response to medications. Learning about SPS, how it personally affects me, has helped me understand how to live with it and make decisions about my healthcare with my neuro.

Some SPS articles are at this link:

http://www.livingwithsps.com/l-links.html

Brown1964, living in the UK, have you seen Dr. Peter Brown or Angela Vincent?

A belated "well wishes" to those contributing to this thread.

“Learn from yesterday, live for today, hope for tomorrow.”

mikeysps

Hello! I was diagnosed with stiff person syndrome in 2001. Over the years, I have come in contact withat least 100 people world wide with stiff person syndrome. PLus I got an email from a lady in the uk who has a support group and website for sps sufferers in the uk. so, yes, we are out there!

Tinman

Hello mikeysps, glad to meet you. Yes there are more of us than I could have imagined. I don't know how it was for you to get diagnosed but it was hell for me to get one. For years I was shrugged off as just a medical enigma and treated more as if my mind needed the work. It was between the psychiatrists and the doctor's until the psychiatrists refused to see me anymore because what I had was medical. After 15 years I was finally diagnosed July 15, 2008 after alcoholism and substance abuse were suspected and finally ruled out, I could not figure it why I was a liar to these strangers? I almost felt shame to be sick and have spasms as I began to began to doubt my own sanity.
I had thought I was some kind of medical freak, the only one like me in the world. I felt I was nothing, had no value, no future and was just a freak. Sorry to say this but I was glad to get a diagnosis finally and discover I wasn't alone or crazy!
I would be interested to know how things went and are still going for you. Write back OK?

Tinman

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