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Regular Member

Date Joined Mar 2006
Total Posts : 135
   Posted 10/25/2007 9:10 AM (GMT -6)   
I am with my twin on this last day here in London.
Both twin and I complained about that touchy feely guy and the manager said that he does it to all of them, meaning staff and that he also tended to be aggressive at times.
My twin was not impressed with this remark.  Me too sick to care.
Had the MRi nothing has changed.  I am still to go on the Heparin injections as I saw Prof Hughes, a fabulous man.
My appointment has been set for 17th November and Prof Hughes is dissappointed.
He noted my muscle wasting and said my CK would need to be in the 1,000's to be polymyostitis but he is more worried about the 'sticky blood' but as my heparin appointment (prob an assessment anyway) I have asked the rheumy and the neuro in Ireland to arrange the two biopsies for before the injections.  One for the sjogren's  and the other to see why the muscles are wasting.
Prof Hughes says that is a neuro problem where the nerves are not telling the muscles what to do and the ENT^ specialist in Ireland said the hoarse voice and the confusion over words is also neuro.
But I still AM applying for the Treatment purchase fund here as Prof Hughes has given me another docs name.
I blitz my neuro consultant from outside the 'museum of childhood' in London on the phone and absolutey cut him to sheds about the way he handled things.
Then I was all upset and sent a fax next day to apologise.
Prof Hughes says sticky blood can change your personality too in certain ways.
Dropped a whole tin of varnish on the carpet outside my room at the convent I was staying as my hands are VERY weak and I got upset.
Twin was WONDERFUL over this stay, did everything for me including pushing me in the wheelchair everywherte.
I donno where I stand really now.
xx for now,
Ann Ireland
Will check the site when back in Ireland.

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 10/25/2007 3:21 PM (GMT -6)   
Oh Ann . . . you sure have your very own roller coaster. Dr. Hughes, Dr. touchy feely . . . two distant places for treatment . . . *phewwwww* I'm worn out just thinking about the effort all of this will take. I sure hope the biopsy gives a hint as to the muscle wasting . . . that is scary. Glad that twin was so helpful and kind for your long trip. I look forward to getting updates on your treatment progress. Are they still doing nothing for treatment??


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