Hello everybody, I've mainly been posting on the Hughes Syndrome blogs, but I have been diagnosed with APS and Lupus "Like" Syndrome.
I've also been diagnosed with Pernicious anaemia and Dystonia, I've had MS for nine years.
I have just learned a little more about my maternal Uncle's medical history. He died age 50, aprox 20 years ago.
He was a fit man, played rugby and enjoyed a drink and a smoke after matches.
When he was 30 he dropped something on his tow, and had to have an amputation. He had three more episodes of gangrene in the leg until it was amputated at the hip.
He was beginning to have similar problems in his other leg.
His dr's said that his problems were smoking related; however I have told my Dr's at Tommy's and they say is is incredibly unlikely that smoking could have caused his problems at such a young age. So we can make a fair assumption he might have had APS.
Yesterday, I asked my mum what was his cause of death? She said organ failure. There was no reason why he should have had organ failure - it was assumed to have been smoking related.
So, I think, it's likely he had Lupus and APS. For him, the worst thing must have been thinking he had caused his own disease.
But, what actually is lupus "like" syndrome, might I actually have Lupus? can Lupus present mildly at first and then be diagnosed as Systemic Lupus? I was only given my diagnosis of APS and lupus like syndrome about two or maybe three months ago. Is it very early for a prognosis to be made?
My APS has been aggressive. In one year I have had an arterial clot in my leg, a near amputation at the hip resulting from a bang to my shin, Multiple PE's, recurrent thrombosis. and a TIA. The good Dr's at St Thomas' diagnosed me as having had a previous major stroke, which at the time the on call DR at my local hospital dismissed as having been "just my MS" and no treatment was given.
It's hard to differenciate between my aches and pains of MS, and aches and pains that are new in my joints. My hips hurt to weight bear (but I have been in a wheelchair since my stroke in 2012) and tying this is beginning to hurt my hands... serves me right for waffling!
Any advice would be greatly appreciated.