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.
Diagnois:
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.
Pain
Treatment
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.
Prognosis.
Feelings:
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;
Naproxen
co-drydamol
paracetamol
ibuprofen
(n.b. I choose which of these I require, I don’t take them all at once)
This is interesting to read. At least for me which has followed your story for the last year….
Thinking of you x
Very full and interesting diagnosis Ann . Never give up as Im sure you won't . Tomorrow's another day . Treatments are progressing and new cures/ treatments found every day . You just never know what's around the corner x
I was interested to read more about your condition Anne especially as it's such an unusual one. I admire your bravery & positivity. I hope you get some happy, almost normal years with your children and your husband. x
I have never heard of this condition before, I am so sorry you have to go through this and admire your bravery to write such an amazing post about your struggle! #MMBC
Hi, wow I was a bit surprised at the amount of medication you are taking, especially the steroids. No IVIg? You must be a strong person on the inside! Any chance your neurologist could look at your medication again, and perhaps think about IVIg (providing you are nt diabetic) ?