Patient Comments: Stiff-Person Syndrome - Symptoms


What were your signs and symptoms associated with Stiff-Person syndrome? Submit Your Comment

Comment from: maryann19478, 65-74 Female (Patient) Published: September 22

My first symptom of Stiff-Person syndrome (SPS) was a really bad back pain. It took me from the early 90s to 2003 to finally get the real diagnosis. I have been on an IVIG treatment since that time and it has worked miracles. I also take baclofen, gabapentin, and clonazepam. I have recently had the shingles. Now I have postherpetic trigeminal neuralgia. The doctors tell me that the nerves from the SPS are fighting each other, which is why it is taking so long to get over it. I was told yesterday it may never go away.

Comment from: Amie, 35-44 Female (Patient) Published: July 02

I am 43 and woke up 4 days ago with a slight earache. I didn't think much of it. By the next morning I was nearly bed ridden, awful body aches, and painful swallowing; it literally felt like my ear drum was being pierced every time I swallowed. I tried some home remedies with little relief. I was diagnosed with strep throat and am on amoxicillin. While there is improvement I can tell I have a long way to go. I haven't been on medicines for 48 hours yet. Hoping for a full recovery.

Comment from: Ann, 65-74 Female (Patient) Published: April 17

I had lower back pain and then stiffness. Then one day while in the doctor's office, I started jerking and would not let the doctor touch me. It scared him so much that he asked a retired neurologist and he suggested it was Stiff-Person syndrome.

Comment from: 4852blue, 45-54 Female (Patient) Published: October 03

I started having increasing stiffness and spasms in my lower back and down my legs. I then started having them in my trunk and most recently have begun to have them in my neck and feet. I am on IVIG that provides no symptom relief for Stiff-Person syndrome, diazepam, 2 muscle relaxers, 2 pain relievers and I continue to progress. I am in a wheelchair and have a sensitive startle reflex and am sensitive to noise, and light. I have other autoimmune diseases as well.

Comment from: HAROLD, 75 or over Male (Patient) Published: August 30

I had no signs or symptoms of Stiff-Person syndrome other than irregular walking.

Comment from: noone, 19-24 Female (Patient) Published: June 26

My Stiff-Person syndrome is not that bad but it can look pretty strange to the person or persons sitting next to me when my body shakes and contorts at weird angles. Also sometimes it happens in a smaller scale, only in my arm or leg and since of course it is a spasm my arm will move. Sometimes I think it is funny other times a nuisance. For instance if I'm in a serious situation and I hear a loud noise or being put on the spot and my body decides to spasm at that moment all I can hope for is it not getting so bad that others know it. Also for me it is caused by thyroid even if it is only a small deficit.

Comment from: Joseph , 65-74 Male (Patient) Published: April 10

I have Stiff-Person syndrome. I can be walking ok and out of nowhere my brain tells my legs not to move and like a short circuit they lock up and I fall like a tree. I also can get overstressed and get pain up my back, from bulged disk, to my head, which makes me have spells such as having an electrical shock, which lasts longer.

Comment from: vapor, 55-64 Female (Patient) Published: March 20

For about a week I had severe inner thigh cramps at night, then came what felt like someone pushing their fist into my lower back, and then the spasms and stiffness as I was waking up. Then one morning I woke up and couldn't move at all. I live by myself, and eventually I was able to slowly and painfully move my legs. Once I was up it took me an hour to shake it off, this occurred on a nightly basis for 3 weeks. Sometimes I woke up in unusual positions. My family doctor sent me to a physical therapist, didn't help because as soon as I was out of bed I was fine. Next a neurologist did all the tests and told me I had Stiff-Person syndrome, put me on baclofen and it helped. I was able to go off medications for 6 months then it started all over again. I am back on baclofen, but it is not helping as much. So the strange part is that I only have symptoms when waking up or in light sleep mode. Every night it is like my body is possessed, my body and legs are lurching, and being pulled by invisible forces. Sometimes I try to go back into deep sleep or have to get up for an hour. Needless to say I can’t get a goodnight’s sleep. Also my left hand swelled and had burning pain.

Comment from: Ann, 65-74 Female (Patient) Published: January 30

My symptoms of Stiff-Person syndrome are stiffness and jumping to the touch. I would not let doctor examine me. I am in pain 24 hours of the day.


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Comment from: DEEG, 55-64 Female (Patient) Published: May 23

I have been diagnosed as having stiff-person syndrome. I have only one comment it hurts like the dickens. The muscle spasms in my right leg and right foot are awful. The pain is unbelievable. My life has been turned upside down. Depression has a new meaning and having high anxiety is no joke. I try to stay hopeful that I can overcome this mess I call the blues. I self-medicate to cope with the daily battle with this stiff person syndrome.

Comment from: pattygail, Female (Patient) Published: November 22

I have had Stiff-Person syndrome (SPS) for about 10 years. I have broken both thigh bones one in 2010 and the other one in 2012. It took a few years to find out that it was SPS. My first sign was I woke up one morning in 2006 and could not move my legs. One doctor told me I had a virus and it would get better in 2 years. I have been through a lot of things through the years from being told I will never walk again. But for 9 months I was in a wheel chair and I am now walking. My systems are now getting worse again. I'm glad I found this website, I'm finding more info on SPS that my doctor didn’t tell me.

Comment from: 45-54 Female (Patient) Published: July 22

My symptoms of Stiff-Person syndrome started with continuous, blinding double vision, which lasted 3 months. After that, I started getting excruciating back pain, and stiffness and spasms in my leg, and fell continuously. I had electrical shocks, numbness, tingling everywhere. In addition, the double vision continued off and on during 19 months, until I was finally diagnosed. Unfortunately, mine was caused by breast cancer which went undiagnosed too late, so was diagnosed with stage 3C breast cancer. After surgeries, and chemotherapy, all my symptoms left me.

Comment from: cjh, 55-64 Female (Patient) Published: January 23

I was treated for many years for multiple sclerosis. Baclofen was the treatment with a pump suggested. I broke both my arms a short time apart and stayed home for 3 weeks the first time, and 2 weeks the second time due to my legs not working. I also fell with my walker and had to have 3 root canals after hitting my mouth. I also went the route of counseling for depression. I was referred to a specialist and finally diagnosed with Stiff-Person syndrome. The IV steroids and taking valium has worked wonders. It has taken approximately 4 years to walk in a parking lot or on a hard surface but it keeps getting better. For me it has been a miracle drug.

Comment from: Dwayne, 55-64 Female (Caregiver) Published: July 29

My wife was misdiagnosed with a dystonia for three years before the GAD test was performed last summer; the test indicated SPS. Since then, she has tried Valium, IVIG, plasma exchange, Rituxan, and baclofen infusion. An evaluation at the Mayo Clinic resulted in a prescribed dosage of Valium with a target of 150 mg per day, which she could not handle and has went through painful withdrawal after getting up to 100 mg. She walks with a cane, has developed an exaggerated lordotic curve in her back, has limited stamina, and has recently started having swelling and pain in her hands, feet, and ankles. She is also suffering with depression. The classic symptoms relating to loud noise, light, and emotional distress, all of which cause muscle spasms, have progressed with her disease. Our next option, apparently, is Cytoxan along with psychiatric intervention. She has had limited benefit from Valium and no positive effect from anything else.

Comment from: monte, 13-18 Female (Caregiver) Published: October 06

My daughter was just told she has stiff person syndrome. Her symptoms started at age 11 and she is now 16. She first started having loss of use of different limbs, then had falls for no reason and they would be forward or backwards. She got startled at any noise even ones she knows will happen. Then 8 months later she started having stiffening attacks that looked like panic attacks, she would stand on tiptoes and would have to be laid down on the ground and her whole body would shake. This went on for around 5 minutes, sometimes she would get sick but would be physically and mentally wiped out. The doctors couldn't figure it out. I have been telling them for 2 years this was the disorder I thought she had. I was even told no way and to stop talking about the stiff person, but I never gave up. Any parent out there never give up!

Comment from: Glasgow, 35-44 Female (Patient) Published: August 28

I was being treated for panic attacks and anxiety for a period of 4 years. My groin and the bottom of my back would go into a spasm and my legs would be a dead weight. I had many falls and after one of them presented myself to ER where i was admitted for 2 weeks. For approx 4/5 days after this fall I could not walk with assistance. I have just recently being diagnosed with Stiff-Person syndrome and i am just waiting to start IVIG treatment which I hope will bring some normality back to my life.


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