Posted 9/5/2007 10:31 PM (GMT -7)
WELL - diagnosis has finally come, of sorts. I saw THE TOP RHEUMY in the UK with credentials and accolades to wallpaper a room! I donno how, but I did. I rang the Lupus centre in London and asked to go over again and try the Lupus line. My life had become so unberable. I took the pics with me - a fab idea from someone here and he kept saying "yes, I understand" repeatedly.
Dx Sjogren's and Sticky Blood which I was told can cause chorea and hand twisting and sudden jerky movements etc. All my symptoms seemed to fit and he is convincded. His Sticky Blood is called Hughes Syndrome AFTER him who discovered it.
I am to start as soon as poss injecting myself with heparin every day for three weeks. And start drops for the gritty eyes.
The chorea is a rare side effect of Sticky Blood.
He did notice the muscle wasting which is now quite bad and I am more and more in a wheelchair and very weak and I asked him would I be come more confined to the wheelchair and he responded that, no he is convinced that it could be better than this.
He had no suggestion for the muscle wasting nor the flares of violent periods of going very, very hot and at same time very pale in the face.
He noted the memory which is crap and it seems to be part of SS
So thats it basically.
Every muscle aches like hell,especially the hands.
Back last night and tis morning my twin and I are having our usual 'snug in' she comes here now with a cuppa tea for both and joing this 'snug in' is my new dog a chihuahua who twin believes is NOT a dog but a very spoilt child.
She 'escaped' while I was away and mags said she shot off like a bat from hell and that she wasnt much the better for it. She disappeared and soon later found her on the door step.
She told me her parki went awol with the hand tremor tremoring like the clappers and the knees weak and wobbly.
I, in an Anglican English Priory, sitting in the 'cloisters' laughed my guts out! Poor twin, it was a huge responsibily and when I walked in the door she announced "there, there your dogs, a present for you, they're yours now, my job is done. and gave em back with mighty relief and now I have as reading matter a book on dog training as my new chi is piddling everywhere and we have to practically go down on hands and knees to find the source of a whiff of either pee or poo.
She is cute though.
all the best,,
Twin has rolled over and said "cute, wicked, wicked!" now Im gonna roll over too.
I would love if a good member of this forum site could paste to the crohns site, sorry for asking I simply donno how to do it
Congenital Rubella Syndrome (CRS) Severely Deaf, Hypothyroidism, Pes Cavus, Crohns Disease, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder (?parkinsons) movement disorder, ? another autoimmune disease.
150mcg tyroxine, 20mg pantoprazole, 10mg Cipramil, 500mg 2 3times a day Mesalazine, 3mg Entocort, 62.5 Sinemet, 30mg Tamazipam, mystatin, sudocream