There has been one event that has dominated my week and it has left me feeling confused.
On Tuesday I had a hospital appointment to see my consultant. I’d had some tests late last year and he had called me in to tell me the results.
This year I have been trying hard to come to terms with my illness. I have been in touch daily with other sufferers via Facebook and my journey has been shared since my hospital stay last January. Reaching a whole year made me feel really low because most members of the group had shown some kind of recovery within a year, or had been diagnosed with something else, mainly Multiple Sclerosis. I began to worry that because my recovery was not happening that maybe that was my fate too. Even if it wasn’t, then the thought of never recovering made me feel really low. One third of Transverse Myelitis sufferers do not recover.
However, my trip to hospital has totally messed up my head as I have now discovered that I do not actually have Transverse Myelitis. The reason for this is because they found an anti-body in my blood which suggests another diagnosis and the EMG and NCS confirm it. I do not have Transverse Myelitis, I have Stiff Person Syndrome.
I will need to go back into hospital very soon for five days of intravenous steroids which is the first line of treatment for Stiff Person Syndrome. I won’t need to stay, I can go in the morning and come home each afternoon. Then I will have a further 3 months of oral steroids. If that doesn’t help there are other alternative medications I can be offered. It sounds good doesn’t it? I can be treated. But, they cannot promise that I will get well, only some improvement. Then I will need controlled medication for the rest of my life because SPS is not curable. SPS is progressive.
It’s been a few days now and I’ve found very little information on Google, especially concerning prognosis, and I’ve yet to find any support groups that are in the UK.
Just when I was struggling with one condition, I find I have something else and it’s thrown me into confusion.