Hi , finally can sit and let you know how we got on ( have been in local hospital since Tuesday with other normally healthy daughter with suspected appendix - lymph glands , never rains it pours) . Meet the registra first who took history and begain to feel like here we go again as she played down the sudden lose of vision , she said the blood test would tell her all she needed to know ?! Both myself and husband where shocked as we had been told that this was the place and feeling no different . The main consultant then came in and I again said about the more recent problems ( had printed out her symptoms and dated as much as I could , plus a few prints of photos I had taken, also day to day account.) she listened and then promptly ordered MRI scans for ASAP and ENT for ears to be done ASAP on the ward . went on to ordered 18 viles of blood ( poor thing looked very drained ) and a ECG for there and then . Noticed lupus popped up a lot along with vasculitis as a heading on the blood forms . Waiting on dates now , but said no diagnosis but systomatic vasculitis ?
Wednesday she told my husband that all the colours are different when her glasses are off ?... And her wrists are hurting . She has also been given corrective insoles to help where here ankles have become weak . The physio noticed how warm they where , later that night we watched her knee change colour as she screamed in pain - hideous ! Tonight her heart area hurts , trying not o lose my cool as I watch my kids fall apart this week ! I think I will ring GOSH ' s rhemotology bleeper they have given me and tell them all the new developments.
Keep you posted !