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Ann Ireland
Veteran Member

Date Joined Apr 2006
Total Posts : 511
   Posted 9/7/2007 1:36 PM (GMT -7)   
after almost 3 yrs of Hell on EArth the famous Professor Graham Hughes in London has diagnosed me with Sjogren's Syndrome and 'sticky blood' I am to start injecting self with heparin. He noticed my muscle wasting but could not make a suggestion for that or the wild flaring up with violent heat.
He said he could help me get much better than this and that he didnt think I'd be so sick as this if treated.
I have a long way to go I feel with the pos on the DAT for Parki and the muscle wasting.
He told me that the chorea and dystonia is a rare side effect of sticky blood which he discovered.
He is world known and the lupus site are amazed as some on their site dx'ed by him
xx to all here
Ann Ireland

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

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 9/7/2007 4:14 PM (GMT -7)   
Anne, I'm so pleased that at last you have a name for what is ailing you. Sometimes that brings such a sense
of relief, because at last you know you not going nuts, and it's not all in "your head". Best of luck Ann xx

Too many years with CD
Two bowel resections, several obstructions.

Laughter is the brush that sweeps the cobwebs from our hearts

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 9/7/2007 4:18 PM (GMT -7)   
I'm so glad you finally found your answers. Good luck with your treatments and keep us posted.
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 

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