Guest guest Posted July 30, 2010 Report Share Posted July 30, 2010 Not sure why I'm telling everyone this but I'm so happy, I have to tell some people who understand...We had yet another appointment today at GOSH, this time with a Paed Rheumatologist. Much to our relief he does not think that the positive test result that had (ANA test) is indicative of any underlying auto-immune illness and he does not wish to pursue any further investigations. WE ARE SO RELIEVED, RAISE YOUR CUP FOR US TONIGHT!!! Unfortunately the Neurologist now wants to move on to investigating Genetic and Mitochondrial illnesses. We aren't sure if we are going to go ahead with this. The recurrent ptosis has now been resolved for 3 months (no symptoms) and we are hopeful that it might never recur. For today we are happy and relieved that we can just relax for the Summer and try to have a nice time with our son! No doctors for the Summer!!! Darla PS - I did follow advice offered here and took control over coordinating the consultants (who were located in over 6 different hospitals). My efforts were not in vain and I would recommend that anyone else who will be seeing multiple consultants take this approach as well. I had a filing system set up with copies of every single piece of correspondece ever written and we took it to every single appointment. At almost every appointment I had to provide documents/test results due to the lack of coordination and often copies were made of my original documents during an appt. I also typed up a sheet with each consultants details on it so that each consultant could copy every other consultant in on their reports. After I established a rapport with a few of the secretaries, they sent me test results that they were not supposed to just because they understood my frustrations and respected what I was doing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2010 Report Share Posted July 31, 2010 fantastic news Enjoy your hols.. Quote Link to comment Share on other sites More sharing options...
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