Stiff Person Syndrome (Stiff Man Disease)

By Jeff, United States, February 28, 2015

My first symptoms came back in August 2012, where I starting having muscle activity such as small spasms and fasiculations (muscle twitches). Soon, I was walking like a toy soldier with stiffness. I saw a Neurologist in Tallahassee, Florida then more Neuros at SHANDS Univ of Florida Neuroscience Center. One diagnosed me with probable ALS. I was sent to another neuromuscular specialist that at first thought I did have ALS but needed further testing. I would undergo many needle EMG's from various Neurologists over this time. I then was referred to Mayo Clinic in Jacksonville Florida. I saw a Neuro specialist there that after testing and examination, told me that I definitely had something going on but he wasn't sure what it was, citing possible ALS but with Cramp Fasciculation Syndrome. He told me one day it would show up in full form. In May of 2014, I had to be hospitalized for Renal Failure due to Rhabdomyolsis (muscle activity which was breaking down to protein which was being excreted through my kidneys). This was hard on the kidneys. In August of 2014, I went to Mayo Clinic in Rochester MN and saw 7 specialists. After extensive testing, 32 vials of blood, and examinations, a diagnosis was made that I had Stiff Man Disease (now known as Stiff Person Syndrome or SPS). The diagnosis came after my myoglobin was extremely high, my GAD65 was high, and my C-Reactive Protein was high. My disease is a neuromuscular disease that closely mimics that of ALS but doesn't always progress as fast as ALS. There are nights I will awaken with severe calf and muscle cramping where I am screaming in agony. I continuously have constant muscle activity in some form all the time. I am on many meds and I take IVIG (Intravenous Gammuglobulin) every 2 weeks through my vascular access port to keep my disease from progressing. These infusions cost $16,400 each and after insurance, my cost is $1160.00 every 2 weeks. The infusions last 5-6 longs and it takes a 1000 people to donate blood for me to get one dose of the IVIG antibody. I set up a GoFundMe page to help with my meds and infusions at:

http://www.gofundme.com/Help-Jeff-with-Meds

This is one of the rarest diseases in the world and there are only approximately 350 in the US that have been officially diagnosed with the disease. Worldwide, I am 1 in 1 million that had the disease. Very little research for a cure is done on this disease because very few have the disease. Google Stiff Person Syndrome and watch some of the videos and you will appreciate life more. I keep telling myself that there is someone that is always worse off than me out there and while I can't do the things I once did, I keep trying to live life the best I can. Jeff Dickey

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.