As you may know if you’ve read my blog before I am a disabled mother. I was diagnosed with Transverse Myelitis on Jan 1st 2016 but my consultant changed that diagnosis just a year later after some tests showed that I have Stiff Person Syndrome. I wanted to record the start of my journey here on my blog, mainly for myself, but also so I can let people know why I am the way I am. This post is very detailed and probably not much interest to anyone else, so please forgive my self indulgence. If, however, you would like to know more about what is wrong with me then please read ahead.
How am I affected?
What Has Happened to Me?
What Can I Expect?
I may get better if the right treatment is found and works on me. But, the truth is, this is a progressive condition so it’s certain that I will get worse at some point. Some sufferers have had remission after treatment and have been able to get back to a relatively normal life. Some have just become worse. I have no idea which one I will be but I do have faith in my consultant who is now prepared to work through the treatments available with me.
Another treatment is Diazapam, a sedative used for anxiety, but it is also good for relaxing muscles. I think I may already be too far gone for this drug, but it may be used in the future.
Other treatments involve chemotherapy and Plasma Exchange, but these will hopefully far in the future if I need them.
List of medication
1200 mg Gabapentin
20 mg Baclofen
20 mg Amitryptiline
20 mg Lansoprazole
2 chewable calcium tablets with VitD
For extra pain relief when required;
(n.b. I choose which of these I require, I don’t take them all at once)