My Stiff Person Syndrome story

The story of Amanda

Hi, my name is Amanda and I’m 63 years old. When I was 17 years of age I was diagnosed with Dermatitis Herpetiformis, then when I was 22 years of age I was diagnosed with Type 1 Diabetes, then when I was 33 years of age I was diagnosed with Hashimotos disease then finally so far in 2013 I developed SPS but wasn’t diagnosed until 2017. How it started might have been a trigger or just coincidental. I broke my ankle at work and after my recovery I noticed a couple of times my left foot got caught on the floor, I thought I might have foot drop but my physio said that I wasn’t lifting my left leg up as much as my right. I was working as a care worker at the time and my left leg felt heavy and it felt like it was using twice as much energy to move than my right and I also had to think about walking instead of doing it naturally. These symptoms persisted as well as having an awareness of the top part of my leg, no pain just an awareness. A couple of times I stepped down a step and my left leg stiffened up, I thought that’s not right but put it in the back of my mind. Things progressed to a point that I had to give up work. My endocrinologist was the only Dr who was listening to me and he sent me to my first neurologist who really didn’t say anything but kept circling my elevated GAD antibodies, which is a marker for Type 1 diabetes as well. He put me on Baclofen and that helped to a point but in the end he said I don’t know. My endocrinologist sent me to the head of neurology at a major Sydney hospital and he told me I had a form of Motor Neuron disease, but I sent him an email and asked if he came up with that through process of elimination and he said yes, so I went home to die. A friend at the pool told me to go and see her neurologist, I rang him up and told him what the previous neurologist said and he wanted to see me straight away, which I did and he told me that he had never seen MND present like this, he did a never study on my left leg and the nerves were firing all the time and had a very strong reflex on that left leg. He just kept saying see how you are in 6 months, time went by and he said I might send you to see this other neurologist, which he did. I should have mentioned that I was using a walker after a year of the symptoms first starting and I was able to keep swimming during all this. When I saw my last neurologist he said I think you have SPS, my heart sank because when the first neurologist mentioned the GAD antibodies, I went home and looked it up and found SPS and I thought I don’t want this. Anyway I was put into hospital and was told I was A Typical. I was put on massive does of steroids, given IVIG, put on diazepam and was still on Baclofen and put on immune suppression drugs, that was 2017. I went into hospital on a walker and walked out with a walking stick. Since then my Baclofen, diazepam and IVIG has been increased to a point that I felt well enough to go back to work part time. It hasn’t been without it’s challenges, I’m not sure if it’s the drugs or the disease or a combination of both but sometimes it puts you in a very dark place. In January this year I felt nearly 90% back to normal then for no apparent reason it raised its ugly head and said I’m still here and don’t you forget it. So I’m one way I’m a lucky one as so far it only effects one leg. I’ve had the usual symptoms, the startle reflex, not liking crossing roads, I’d rather walk on uneven grass than walk on roads or pavements. Your brain seems to play a big part in this disease. I do what I can and don’t do what I can’t. I’ve managed to walk up the arch of the Sydney Harbour Bridge, parts where a challenge but I did it. So at this point in time, I’m not sure if it’s progressing or not, so we just keep on going.