In January last year I was diagnosed with an auto-immune neurological condition, Transverse Myelitis.
There are a few things that I have learned about neurological conditions.
- They are difficult to diagnose
- Everyone is different, even with the same diagnosis
- Diagnosis can change
Here is a description of Stiff Person Syndrome from The Tinman
Stiff-person syndrome is a combination of symptoms which can include muscle stiffness, rigidity, spasm, muscle overactivity, specific contractions, seizure activity, and heightened response to stimuli resulting in exaggerated startle reflex triggered by noise, touch, or emotional distress. The classic pattern begins with stiffness and rigidity of the axial (skull, spine, and tailbone) muscles and can progress to the limbs. Stiff limb variants first affect primarily the leg muscles, and occasionally the arm muscles.
If untreated SPS can lead to total body rigidity, that’s right, every part of the body, including the face so you can’t speak. Thankfully, now that I’ve been diagnosed the treatment will prevent this happening.
I’m still coming to terms with the new diagnosis, and at the moment I’m in confusion. Everyone says not to Google but of course you do, some of the sites are not very helpful at all, others focus on the real scary stuff (I’ve read several medical studies where the patients all die within a year!) I have every confidence in my consultant giving me the best options from now on. He could have just left my diagnosis at TM but he knew something was not quite right and did several tests to find out what was really wrong with me. My future does not have to be grim, just different.