Stiff Person Syndrome (SPS) Community

Learn how others live with Stiff Person Syndrome (SPS) and share your story

The beginning of my disease

by Monica2576 published about 1 month ago

First diagnosis: spring fatigue. I soon started to feel a bit of rigidity in the right thigh and one day I suddenly started having cramps in the lower part as well as immobility, preventing me to walk properly... Then the odyssey began, while looking for any possible diagnosis (multiple sclerosis, CFS...), until I finally got the diagnosis: stiff-person syndrome. It was 10 months of uncertainty...

Stiff Person Syndrome - Italy

by maurizio01sr published about 1 month ago

Hi, my name is Maurizio di Mauro, I'm 43 and I'm from Siracusa (Italy). In March 2014 I was detained in prison; while I was exercising I had a collapse and was brought immediately to the E.R. They made some specific tests, among which CPK... results showed very high values. Since then my conditions kept worsening; I could hardly walk, my legs and arms were so swollen they seemed ready...

I was diagnosed with stiff person syndrome in 2010.

by RareConnect team published about 1 month ago

After 2 years of going to various hospitals, a Chilean doctor who studied in Germany and a German doctor who worked with patients of rare diseases in Chile offered me a treatment which consisted partly of medication and partly of water-based exercises, which I accepted.
I began with a treatment of 30 x 10mg Diazepam per day which, here in Chile, is a muscle relaxant, but it is sleep-inducing,...

Diana’s Story

by RareConnect team published about 1 month ago

For three years I have been searching for answers.

I have been diabetic for 6 years and have required insulin for about the last 4 years. In mid-2004 I began experiencing the then occasional symptom of not being able to move my left leg. It did not respond to the order to move it; I had to stop walking and move my leg from my waist, like a robot.

And memory problems. I did not feel pain o...

Progression of symptoms until arriving at a diagnosis of stiff person syndrome and mild mitochondrial myopathy

by RareConnect team published about 1 month ago

Unwell, at the age of 20 I am diagnosed with diabetes.

I am diagnosed with epilepsy at the age of 25 or 26, having two fits per year; since I have been taking Diazepam, I have not had any more fits.I take medication for both diseases.

On 28/5/2010, I am admitted to hospital because of a collapse.

At this point the disease is still not identified.

Speaking to my co-workers today, I a...

Tanya

by RareConnect team published about 1 month ago

I used to hide my condition from people because I felt absolutely “silly” as to why I could not move, or walk at times. How can you tell people that you are just “stuck?” I had no idea of what was wrong, so how could I tell anyone else? I still sometimes hide how bad some days are as I do not want my family and friends to worry. I finally had an anti-GAD antibody (glutamic acid decar...

Helmut from Germany

by Helmut published about 1 month ago

My name is Helmut and I live in western Germany on the border to Belgium and the Netherlands. Before I retired, I was Professor for Information Science. In March of 2015, I was diagnosed with "Progressive Encephalomyelitis with Rigidity and Myoclones" (PERM), a rare variation of the Stiff-Person Syndrome. With my story, I want to portray the course of events with the characteristic...