Living with Stiff Person Syndrome

• By Brown1964
• Posted August 29, 2009 at 6:38 pm
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This is like your worst nightmaer come through, which you would wish on your enemy. Ihave being struggling with, some of the condition that you are going through, the spsams where bad, sometimes up to 16 hours i was having them, then the pain in my back and legs. i WAS put on Diazepam at 10mg per day which did not touch the spsams, then i read an article about SPS and it said that you should be on a high dosage of Diazepam, by this time my legs started to stiffen, and my wast could not move, so i use in one place for houres, then i got to the point where i could not take it any more so i try to get my Doctor to increase the Diazepam, he refuse to do so, so i did it my self and the box that he gave me with 28 tablets i finished in two weeks and it worked, but when i told my Doctor that it had worked and my carers was their to witness it, my Doctor took me off the Diazepam for two weeks, i was then confine to my bed in pain and spasm, the after making a complaint, two weeks later i was put on 30mg of Baclofen and 30mg of Diazepam which had made a difference to my spasm and the stiffness then with a bit of pressure he increase it to 40mg, and then i was sent to a Neuroligest and he increase my Baclofen to 90mg along with anti-convoulsion drugs, but its being a while know and my hands has starts to lock up, its that bad that it took me over an hour to type this message on my laptop using big thumb with the nuklle. But because of having a strong faith, i would not have got through till know, so although its each day is another battle won and with Jehovah's help i will keep fighting, and if we keep fighting toghter, who knows what we will acommplish, keep fighting one and all

E.Brown

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• By maux
• Posted August 30, 2009 at 9:13 am
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Great story, all too familiar. Rest up while the valium replenishes the anti-GAD in your body. Stay online. We're here. / maux

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• By 1955-53
• Posted August 30, 2009 at 10:57 am
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Thank you for replying to my story. I am so sorry it is in your hands. I am feeling it in my feet & ankles. It is very strange to battle with your own body. I have faith also & know God will get me through no matter how much I get down or in pain. When it is real bad, I stay in my bed in the dark & quiet, and I picture myself facedown at the feet of Jesus. We know we will be free one day of this monster & I do look forward to that day! I will pray for you and it's nice to hear from someone that knows what this is like!
Diane

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• By 1955-53
• Posted August 30, 2009 at 10:58 am
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Thank you for replying, it's nice to hear from people who know what this monster is like.
Diane

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• By 1955-53
• Posted August 30, 2009 at 11:18 am
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Thank you so much for replying. Just hearing from people with the same thing helps so much. It is so rare. It sounds like you have had it a long time. I saved your email and will visit you. You are right, you have to have God to walk this road with you or you will let it take over and destroy you. We have to be survivors and warriors against a terrible disease that God never intended for us to have.
Diane

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• By 1955-53
• Posted August 30, 2009 at 11:31 am
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I wanted to write you more because you seem to be having such a hard time, especially with it in your hands. You know your body & if you don't see changes soon, fuss at your doctor. Of course, in a very diplomatic way but they may need to increase your valium more. I have read that they can go up to 100mgs. a day if severe. There are also other things that can be done. Do some more research & take it to him. My heart goes out to you so much that you would take the time & write me. I will pray for you to find favor with the Doctor & God will open his heart & show compassion and give him the answers to help you get better & get this under control. You are a special person. This disease is horrible but we will overcome with God leading the way and holding us up when we can't take anymore. Please hang in there & get better soon. Keep me posted as much as you can type. God bless you. Diane

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• By maux
• Posted August 30, 2009 at 2:08 pm
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O posted my story over on the Facebook page, Ainslee, but let's swap 'em here!

Diane: Friend us. We want you to join Team Spazz. You've got fresh perspective on the pain insanity we all remember.

This is my story. Of my wingnutty illness.

Jan. 2001 - "The bed bug bit me, " I told the doctor at Bellevue. "I know that DDT killed off most of the bed bugs after World War One. I thought they only existed in nineteenth century novels! On trains travelling through Siberia! Isn't that funny? I hear they are back. I saw one. And it bit me! The bed bug bit me! I've had the itchies ever since. And my back is morphing out of shape, right in front of my eyes!" I understood that I was rambling, but I was desperate for a reason, a clue. I had already seen a dermatologist who did nothing and charged me $500 for it. The doctor nodded and wrote something down. Doctors don't look at patients. They examine information.

I had a seizure the day before. That's why I was there, in Bellevue's emergency room. The doctor noted that I was on ecstacy at the time of this grand-mal seizure (the shakes, the convulsions, the whole nine). She assumed I had a bad reaction to an illegal substance. The only conclusion she could reach, based on the facts. Facts don't include things like "bed bugs," "the itchies," "morphing." Bed bugs are imaginary. Morphing is a comic book creation and she had probably never read a nineteenth-century novel. I suppose she thought I was schizophrenic as well as a drug addict. She sent me for an MRI anyway.

I had no idea what was wrong with me. Within the space of three months I went from dancing and acting five nights a weeks to uncontrollable spasms, itching, pain and no sleep. I couldn't wear loose clothing because anything that tickled the surface of my back sent me into spasms of pain. I tried to explain that I have had petit-mal seizures since I was a kid. An MRI? Been there. Done that. Something was wrong with me. My body was breaking down. "I also fainted on New Year's Eve. No drugs. No alcohol," I said. The doctor nods and writes something down.

A second seizure ocurred after a five-hour wait for a follow-up appointment with the Bellevue neurologist. Three weeks after my first seizure. I wasn't on drugs during the second seizure. I was taking a bath, actually, trying to relieve the pain and stress of being in the hospital all day. My boyfriend had to save me from drowning. I got a script for an anti-seizure drug called Tegretol.

Friday, the thirteenth of February, 2001. My doctor, my overpriced "alternative" doctor with the three feet long dreads and eight children and a thriving practice in the Slope, sent me to the hospital nearby. I had started to react to the epilepsy drug and I was suddenly (since the last visit) bruised and swollen. I had already spent thousands in his pretty office. He said, "I consider myself good at diagnosis but...." shaking his head. He said he would call his call "friend" - code for the "other black guy at med school" who at worked at Methodist Hospital and sent me over there. He said his "friend" would look out for me. "It's a good hospital," he assured me. These two men could not have been more different. Dr. Skeptical was a surgeon, believed "alternative" medicine" was nonsense and never showed up in the emergency room. Then he tortured me. Read on.

I was once again in an emergency room begging for help. "Do you drink?" the triage nurse asked me. "Uh, no, " I replied. I hadn't been drinking, in truth. "Are you an alcoholic?" was the next question. "An alcoholic!" I guffawed. When I say guffaw, I mean guffaw. I am a comedian. I was three months without sleep at this point. Everything seem hilarious and tragic all at the same time. "An alcoholic. Why not? Sure! I'm Irish. A family reunion means half the crowd takes off for an AA meeting!" I thought I was a cut-up.

Someone with a tag that read "MD" asked me why I didn't "look it up on the internet"? Not kidding.

They sent me for an X-Ray. I refused to put on the hospital gown. I told them the fabric... the itchies... the pain.... You should have seen the look on his face, this X-Ray technician. Now he had seen it all, I guess. I refused to wear the hospital gown. He had a naked, good-looking (some say "hot"), thirty year-old woman jumping around in front of him. The shrink came to see me next.

Dr. Vizner, the emergency-room psychiatrist decided I was bi-polar. She asked me to sign myself into the psychiatric ward. "Free medical care, " she coo'ed. "No way, doc. You are crazy. I tell you, I am in pain. Physical, tortuous pain. Like someone is ripping me apart, tearing at the muscles around my midsection." She couldn't get me to sign, so she left.

February 14, 2001, still in the emergency of New York Methodist Hospital. 2AM. No Dr. Skeptical. No neurologist in sight. There are never any neurologists in emergency rooms. I doubt they would useful even if they were. Neurologists don't like to touch people. They get to hit people with little hammers. Dr. Skeptical had yet to make an appearance. Crying. Screaming in pain. A nurse finally took pity on me and slipped me 5 mg of Valium. I finally slept.

Three months of fitful sleeping, with a book under my back so I could not touch the mattress and "the spot" on my back that set off the spasmatic, tortuous, itching sensation, two grand-mal seizures and three weeks of zero sleep. A kind nurse finally got it to stop with a little common sense.

While I slept, thanks to the "V," my 6'2" boyfriend curled up at my feet on the hospital bed to catch some zzz's himself. Dr. Vizner woke us a few hours later. When we were woken, he left for a moment, to use the restroom. Dr. Vizner took the opportunity to get me to sign. I was too weary to resist. I could only swim in the bliss of a few hours sleep. I signed myself into the psyche ward.

My boyfriend flipped out when he returned. They wouldn't listen to him. They thought (or assumed, like the drug thing, like the crazy thing) that he beat me and that was why I was bruised "in the groin area." (Turns out it was the Tegretol, bruising and swelling both listed as reactions.) That was not considered at the time. I was more likely a crazy, beaten, drug-fiend hysteric who wouldn't accept their offer of pychiatric help.

I clearly remember my mother entering the triage ward. Oh, yes, I never left triage during the eight hours in New York Methodist Hospital Emergency Ward. I was in a bed in a huge room. It was curtained so my boyfriend could sit there and hold my hand. More likely though, I got a curtained bed because they didn't want to deal with me. I could peek out, though. I saw my mother charge into the room. "Where is she?" she demanded. My mother is a grade school teacher. She is used to being in charge. My boyfriend told her about the bait-n-switch by the shrink (a bad word for psychiatrist, I know, but I think Dr.Vizner deserves it.)

Mother got me un-signed to the pysche ward. She got me a hospital bed. She took control. I stayed in Methodist for a week. I fianlly met Dr. Skeptical. I have the paperwork. It's hilarious! "Lordosis unremarkable, possibly bi-polar, refuses psyciatric help, grossly unremarkable study of the spine, no significant neurological disorder, no known medications...." Hello! What about the Tegretol? Principal diagnosis: bruising in groin area. For three days, I screamed and furiously pressed the nurse button. Every few hours, a frustrated nurse would, with a sigh, administer another shot of Percodan or one of those drugs they give you when you got a broken leg. I was no longer cracking jokes. I was very very angry. What about the valium that had worked so well in the emergency? It's addictive, I was told. Huh? I told them I had never taken it before in my life. "But you tested positive for it," said Dr. Skeptical. They gave it to me in the emergency room! "Oh. Well, it's still addictive."

On the third day, I received a final visit from the shrink whom I told, in no uncertain terms, to fuck off. They finally gave me some valium. Three more days, with the bruising lessened (no more Tegretol) and nothing further to conclude, I was released with a script for a valium and a huge bill.

Eight months, dozens of doctors, and fifteen thousand or so (cash, paid) dollars later, I found out I had Stiff Man Syndrome. Dr. Frucht (swear that is his name) at the famed Columbia Presbyterian was so thrilled by his diagnosis. "Confirmed by the Mayo Clinic!" he said, jumping with joy. He got to diagnose a Stiff Man! My mother was angry when I burst out laughing. I got Stiff Man? Which is more "crazy?" Art or science? You decide.

I love the name of my disease. Only a comedian would get a disease called Stiff Man. Now I've always liked 'em stiff, but.... tah-dum dum.

My old psychiatrist eventually assured me I wasn't crazy. I have a physical illness.

One little enzyme is missing and now my back disfigured with severe lordosis. Valium saved my life. Thank you Dr. Leo Sternbach (the man who discovovered valium.) It controlled the pain. It controlled the symptoms. It took the three months to get a prescription because of my "drug history." Just a little reminder not to be too honest with your doctor. I told them that I had been using marijuana (a lot) to control the pain. And I was up all night and my brain was fried from pain (and pot) and lack of sleep. If I were a real drug fiend, I think, I should have taken heroin. Heroin might have helped. I can say this in retrospect. At the time, though, it didn't occur to me to try heroin or opium or some sort of muscle relaxant. Marijuana is not a great muscle relaxant, but it calmed me and helped me to eat. Pot heightens a person's awareness. I was very aware of the pain, the searing, tearing pain. I was becoming paranoid. Weed didn't help all that much. I can say this in retrospect. It calmed me on the outside, so other people could deal with me.

And the Stiff Man lives. She even walks again, albeit with her ass sticking out. She takes valium 5 times a day. She practices her own unique yoga and has created her own dance moves. She is even performing again.

I always wanted to be funny. Now, I am also funny looking. I am the woman who walks with her ass sticking out. I like to say that I have Ass Disease. I have a bulging stomach that makes me look pregnant because my back is curved (lordosis looks like a swan, says my darling friend); so arched and protruding that I look like a woman with a severe case of Ass-itude. I walk with a waddle and the accompanying wiggle.

I want, someday, for my story to be published so people can see, up-close and personal, the limitations of scientific (medical) inquiry, the ineptitude of most doctors, the prejudice against women and "ethnic" people that inform medical diagnosis, and, perhaps, how far we have to travel to finally become our own special self.

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• By Betty-Oops
• Posted August 30, 2009 at 11:12 pm
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E. Brown, it is people like you, determined and hopeful, that encourage me. Most would not bother to spend an hour of painful typing to help another. Thank you for the blessing.

Anisah-Flower, How did you get approval for rituxan/rituximab along with IVIg? Why is it administered every 10 weeks when the NIH trial involved two infusions with benefit from those who experienced it lasting two years? Does it help? Thank you in advance for any answers.

Maux, thank you for your personal history. SPS diagnostic stories read like a proposed Jerry Springer season. Ding! Ding! Ding! Except SPS is the out-of-control bouncer? ;)

Diane, I have lived most of my adult life with SPS. It is assumed that coping with any chronic illness is completed within a time limit. Having lost loved ones during my life, time does dull the initial grief of loss. Chronic illness is a daily reminder of loss. At least for me, coping is as much of my daily routine as the meds I take.

While finetuning my medications with symptom severity [brutal at diagnosis], I had to do a lot of internal readjustment and reassessment - focus on Maux's cool remark - "my special self."

Because of limited mobility, I have discovered aspects of myself after diagnostic fallout. I work on developing unearthed talents, rediscovered creativity, and appreciation for simple.

Every morning is a new start. Some days are a drag-my-feet 'go' while other days are a blanket over the head - 'go away.' I work on letting go of the blanket. It is difficult to lose sense of self surrounded by physical pain.

I am careful how much 'negativity' I allow into my mind. These online forums can be informative and encouraging. Other times, they become a massive block party whinefest - community commiseration 24/7.

Outside of faith, understanding SPS has been one of the most valuable tools in working with my doctor in honing my treatment. The 'informative links' page at www.livingwithsps.com has some good starter articles for SPS basics. I refer to it often.

Humor, family, friends, and vision still give my life purpose. Communication with those who do understand has been a major comfort to me.

God bless and future blessings to you.

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• By RT
• Posted August 31, 2009 at 12:48 am
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SPS is as brutal as it is unkind. I am happy you discovered NORD. There is a lot of information, support and understanding here for you. SPS is a very complexed disease and there are several variants of it.

The best of health to you!

Robert

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• By Tinman
• Posted August 31, 2009 at 8:36 am
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My God what a horrible experience but so typical of the treatment we receive. I also had bad ER experiences when having severe spasms. My legs were so out of control my husband had to lay om then at the hospital but they acted like I had mental issues. Several timed the mental cruelty suffered because of the reaction of these health workers caused me to leave in the muddle of an exam.

I spent a total of 7 years with psychiatrists and they all said my problem was medical. After 15 years of suffering and not being believed I was finally diagnosed with SPS. Now I am on valium and other drugs. In fact I take 34 pills a day and get an IVIG once every 3 weeks. My spasms are still progressing.

Still those years of neglect and being forced beyond my capacities over and over has made me much sicker now.

It was a horror story you just shared and I thank you for that. It shows others that we are in the same boat. No one here among my doctors knows of it or how to treat it. I travel 600 miles for a specialist.

I am moving this week to be closer to her for better treatment. Thanks for sharing and getting this out.

I am afraid for my future and the thought of an attack at anytime keeps me afraid because of the pain and helplessness. I also have spastic bowels which can be embarrassing.

You are not alone and I am sure will receive much the same stories from others. We are in this together and we need to support each other.

You went through hell no doubt, I could feel your emotions in your words. It is inhumane how we are treated. I am really so sorry for you and I do understand the pain level. I have been ready to chop off my leg and sometimes I would rather die than stay in that kind of pain.

You are right, pain will put you out of your mind. It happens with me. I panic and get out of control mentally begging for relief or death.

Hoping this move will change my life for the better. Good luck, keep strong. We are here and fully understand.

Tinman

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• By 1955-53
• Posted September 2, 2009 at 1:18 pm
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I don't understand why we have had to go thru such hell to get diagnosed. We are treated so much like a psychiatric patient first. I am so sorry for the way you went to get diagnosed. Thank you for sharing your story. Hearing from others that know what this has been like is really helping me. No one knows until they walk in our shoes. I hope you can get published & I love your since of humor. I laugh at myself most of the time but I look 6 months pregnant now because the valium has blown me up. In three months I have gained 40 lbs. I have all this weight in the middle. Like I said, @ 53 it doesn't look right. Laying down is the only comfortable way for me. They changed my blood pressure medicine that has a diuretic that will not lower my potassium. The disease did that to me also. I have to take potassium everyday. I know this will be a rough road ahead but having the support from you & others really helps!!!!!!!!!!!!!!!Thank you & stay in touch. Diane

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• By 1955-53
• Posted September 2, 2009 at 1:23 pm
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Faith is definitely the bridge to get through this nightmare. Thank you for replying back and all our stories sound so similar. Hang in there & stay in touch!
Diane

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• By BravesLover
• Posted September 3, 2009 at 5:09 pm
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I went through the same thing with the ER's thinking I was faking the spasms just to get pain meds. I hated what I was going through, having full body spasms all day long for two weeks until I could see a neuro and he thought it was just stress. Thank God for ones that do know what sps is. I don't think I could have taken much more without the correct diagnosis and the valium, baclofen, and neurotin. Everyone really needs to join us on Facebook like Ainslee suggested it is great. How do you join team Spazz? Anyone can email me at tinam_328@hotmail.com anytime. I love talking to fellow spsers. I can believe how hard a time you had 1955-53, pain is a terrible monster. I don't know how many days I have been put in the hospital on iv valium and demerol and still had some killer spasms between dose times and had to just lay there and cry until they brought me more medicine, it was usually at night when I was there all alone, I can't wait for the day when there will be no more pain, and Jesus will wipe all our tears away, we won't be in pain and lonely anymore, Hallelujah!!!!

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• By Betty-Oops
• Posted September 3, 2009 at 10:04 pm
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Hi Braveslover,

SPS is a vicious and cruel disorder. Diagnosis is difficult because if one does not test positive for the GAD autoantibody or continuous motor activity with an EMG, the diagnosis is subjective based on clinical manifestations.

I have had my encounters with condescending or "God-syndrome" physicians, along with my own difficult diagnostic saga. The longer I have SPS, the more I understand how difficult diagnosis can be because of the subjective nature of diagnosis and the rarity of the syndrome.

Just participating in Inspire, I realize how many individuals have rare disorders and suffer the same years of limbo and misdiagnosis as those of us with SPS. I have had SPS long enough to see some major awareness, research, and treatment options surface due to the dedication and efforts of some amazing neurologists. Things move just as slowly for them as they do for us.

It is wonderful to meet and share with others who understand the specifics of SPS. It has been a major encouragement and education for me. Many individuals with SPS have touched and blessed my life - and continue to do so. ;)

Facebook is not a forum in which I wish to communicate. In years of online SPS communication, any forum is only as good as those who participate. ;) What I personally like about Inspire, it is associated with NORD which has done so much, not only for SPS, but rare disease awareness.

Check out this link and click on 'list of partners.' NORD provided a platform for SPS awareness.

NORD'S Second Annual Rare Disease Day:
http://www.rarediseases.org/rare_disease_day/rare_disease_day_info

My faith has sustained me, comforted me, and given me strength. I understand. ;) Until 'the day,' I thank God for giving me life to share Him and love Him.

May God bless. ;)

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• By mela_2u
• Posted September 4, 2009 at 5:02 am
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My sister is going through the same problems, have had up to 7 years was diagnosed with SPS. I wanted to ask, there is something that can be given in the moment when the muscles contract?
Sometimes no longer know how to cheer my sister , she is depressed, angry because of the pain.
And when she get up from the bed she have a continuing fear, afraid of everything and this thing is a give back ... which is not good for her;
She doesn't leave the house and a few times she get up from bed, in this case I don't know what will come more....
I hope with all my heart that science find a better solution for this condition

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• By maux
• Posted September 4, 2009 at 8:12 am
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Dear Diane,

I have the 'ole pregnant look. also put a few pounds on after i was medicated (finally) b/c I wasn't eating - just regained what I had lost. I never imagined that valium "caused" the pregnant look or the weight gain. I've been complaining about the bulging belly for years and they say it's just the lordosis. I never imagined valium could be implicated in this way. I never accepted the doc's "Your back sways in, so your belly sticks out" answer. Yes. I know there's not much room in there, but... I was recently dx'ed with celiac. Maybe they will give me some answers.

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• By DrJim
• Posted September 4, 2009 at 10:59 am
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So saddened to read how many of us suffered for years before being diagnosed.

I find the best way to handle each day is to think of the disease like the weather. Forecasters can guess at what the next day will be like but no one really knows. What happens, happens.

Try to take it an hour at a time - it helps to become very existential and live in the moment. You may feel good now, but the clouds may roll in later, or not.

I've found, even though very skeptical at first, that hypnosis/relaxation exercises really help when those spasms make you want to scream and cry at the same time. It helps to refocus and calm everything down. I'm always impressed by how well all of you tolerate Valium. It's definitely helpful but turns me into a zombie. Hard to find a good balance that allows me to remain functional.

We really need to work on organizing and getting info out to physicians so future patients can avoid the delay. Research funding would also be nice but good luck with that.

Maux-

keep us laughing. Waiting for that one-woman show to be produced. How about a you-tube SPS riff?

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• By BravesLover
• Posted September 4, 2009 at 4:39 pm
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Thank you maux for sharing your story, how terrible,and I thought I had it bad. The group of us on Facebook are trying to get a non-profit organization going so we can get the word out to Dr's and others to start doing research on SPS. My neuro is going to a conference in San Diego the first two weeks of Oct. and they will be discussing the use of rumxitab for sps. He said we will talk about using it the next time I see him in Nov. I told him that if he could just get these two spots to stop hurting so much then the spasms would lessen. He pressed on them and called them trigger spots. He then told me he could do injections into them that would lessen the pain. OH my God, I have felt so good ever since then. No feeling like my body is fixing to explode into spasm because that one spot on my back in hurting so bad. It just barely bothers me anymore. He said he could do the injections every so often. Why didn't he tell me this a year ago when I first told him about that one spot that just killed me. I don't know maybe he just wasn't listening that day or maybe it was because I sought out a second opinion from another neuro that my cousin who is a gastroenterologist referred me to. Maybe he thought that he was going to lose me as a patient and he ought to listen to me now. Well I will get off of my soap box for today. God bless everyone and have a wonderful weekend, stay safe. Tina

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• By confused13
• Posted September 5, 2009 at 12:17 am
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I'm really upset and I really need someone's help. I took the anti GAD test today but I am taking methorexate for what they believed to be RA.. I'm thinking it's been stiff mans all along. Anyway that medicine supresses the immune system some. Does that mean my test will be wrong and it won't show up???? So stressed out, someone please help ease my worry. Thanks so much

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• By rickthurbon
• Posted September 5, 2009 at 4:34 am
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BravesLover

Greetings
Those injections sound great - do you know what the magic potion is ?
Was it Botox because I am having that in my neck and have been for nearly a year - works well there.
Regarding the Rituxin - I should be starting next week with my three monthly dose for Isaac Syndrome.
It appears that SPS might be related to it.
It might be worth mentioning my treatment to your Doctor.

Kind Regards to all
Rick
Sydney Australia

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