Stiff Person Syndrome
Since achieving a disease-free status in April 2022, significant progress has been made.
A neurological evaluation in March 2026 confirmed that most symptoms have resolved.
A neurological evaluation in March 2026 confirmed that most symptoms have resolved.
- Hi dear!!
Anastasiya
Administrator AHSCT RUSSIA
Hello 🩷 🩷 🩷
Sorry it too me so long to reply. Busy days!
I'm still doing very well. Summer weather is good for stiff muscles. In March 2026, the neurologist said it seems like most of my stiff person syndrome is gone, and what little remains is in my left leg, from the knees to the toes. This stiffness comes and goes when my situation is stressful.
Sorry it too me so long to reply. Busy days!
I'm still doing very well. Summer weather is good for stiff muscles. In March 2026, the neurologist said it seems like most of my stiff person syndrome is gone, and what little remains is in my left leg, from the knees to the toes. This stiffness comes and goes when my situation is stressful.
Laura
Disease-free since April 2022
- How do you feel? What's the news?
Anastasiya
Administrator AHSCT RUSSIA
So here is an update from last time, and hopefully you see the video of my going down the stairs. (I just realized I am not using the heels of my feet on the stairs, but I can usually get my heels down.)
- I still can't walk down more than 2-3 stairs without knowing there is a handrail nearby.
- I can walk down 3-4 stairs without a handrail when I am familiar with the stairs, and 2 when I am not. If there are more stairs or it’s unfamiliar, I don't need to use the handrail but I have to know the handrail is there.
- Steep hills are too difficult for me also, unless there is a handrail or someone close by. I think I can do even steeper hills than before. Bit by bit, I see improvement here.
- When I'm quite tired, my left toes don't pick up and I can trip over that foot a little bit.
- My right foot is almost always normal. I worked with a physiotherapist to increase my toe control and mobility. It's not perfect, but it's better, and I haven't tripped over my left toes for a long time now.
Laura
Disease-free since April 2022
Things I can do again since my treatment:
- Activities inside my home is very good. I can shower, cook over the oven, serve dinner...everything.
- I walk our dog 3 times per day, and can bend down and get up again.
- I work full-time. I work outside, in all weather.
- I can walk up and down gentle hills in unfamiliar neighbourhoods.
- I can talk to strangers for 5- over 10 minutes while standing up without any support or movement.
- I can stand in a line-up
- I can ride a bike again.
- I can walk down a dock with no railings on the side and jump off the end to go swimming.
This is the dock – and my family
Pretty good for a woman who used to need a walker at the airport!!
Pretty good for a woman who used to need a walker at the airport!!
This isn’t me)))
But walking down the dock and jumping off feels like this
But walking down the dock and jumping off feels like this
- Medication:
- I'm taking 750mg mycophenalate/day and 0.50-0.75 mg clonazepam/day.
- Energy
- Great!
- Health
- I feel very good
- Mental Health:
- I feel great; I do not feel anxious or depressed.
- I'm very optimistic about life.
- I'm capable of concentrating I'm currently in post-graduate studies for a Master of Arts in Disaster and Emergency Management – grad March 2027
I hope you are all doing well. I am sending lots of love to you all 🩷 and best wishes and prayers for all your patients.
XOXOXOXOXO….times infinity!
XOXOXOXOXO….times infinity!
Laura
Disease-free since April 2022
Thank you so much for reply ! So happy to hear from you !
I’ll share news with drs asap !
Stay healthy and happpy dear friend !!❤️😘😘😘😘😘
I’ll share news with drs asap !
Stay healthy and happpy dear friend !!❤️😘😘😘😘😘
Anastasiya
Administrator AHSCT RUSSIA