My illness started in the 2010/11 winter with what was firstly diagnosed as a sinus infection. Courses of various antibiotics failed to clear this up and my health deteriorated with the onset of general lethargy and excruciating pains in my joints and muscles. I also became very hard of hearing and was eventually rushed to the emergency assessment unit at my local hospital for tests including bloods and fluids. Within twenty four hours WG had been diagnosed and after an infusion of steroids all of the symptoms disappeared. I underwent the normal tests and scans and a kidney biopsy showed no damage. I was then scheduled for a course of cyclophosphomide and I expected to make a speedy recovery and get back to work.
However, between the second and third dose of said chemotherapy, during a weekend in early May my WG attacked the small blood vessels in my hands, wrists, ankles and feet. As a result I suffered extensive nerve damage and when I got out of bed on the Monday morning I collapsed to the floor. I had lost total use of my hands, wrists, ankles and feet. I was readmitted to hospital unable to do anything for myself. I was then put on a course of retuximab which, together with weekly methotrexate seem to have my WG under control at the moment. After four weeks in hospital I spent eight weeks in the local neurological rehabilitation unit and with their help, for which I will be forever grateful, can now get around. At the moment I can only walk with a crutch and calipers to support my ankles, am slowly getting the use of my hands back but due to my condition have had to take early retirement. I rely on my family for help as it is extremely frustrating not being able to tie shoelaces or to do up buckles and buttons etc.