I posted awhile ago asking if anyone had been to Bath for an assessment for EDsh as I had been referred there and was hopeful to know if it was indeed Edsh I have been suffering with.
I received a very vague letter today telling me I have been removed from the waiting list. After calling around to find someone who could explain I finally got in touch with the Rheum. Outpatients appt's. who said that a Dr.Jenkinson, who is the only Dr. dealing with EDSh at Bath, is moving away and from now on EDSh will be treated by the physio team just the same as fibromyalgia as it is not an inflammatory condition.
I asked her if they were able to fully assess patients, as it is an assessment I am after but she was unable to say.
The letter states that my GP has been notified and I can ask the GP to re-refer me however the woman I spoke to says that is a mistake and is probably part of a generic letter because there will be no one else (in Bath) to be referred to.
Now this means another GP appt just to find out what is going on. Have I been automatically moved to an appt with the Bath physio team? And If the physios are a regular physio team the same as we have where I live, then there is no point in going to Bath anyway. Feeling pretty disappointed... Not sure where to go from here.