Patient Comments: Stiff-Person Syndrome - Symptoms

Question:

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

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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