My name is Wendy. I am 33 and I have had CIDP for three years. I work as a free-lance musician, playing and teaching the cello. I had no hospitalisation or illness of any kind prior to being diagnosed with CIDP.
The initial onset was very slow. I noticed tingling in my fingertips in early April 1997. As a musician I was very aware of this extra sensation and I went to my GP. Nothing was obvious at this stage. About mid-April my fingers were becoming clumsy and I was suddenly not able to play the cello as I couldn’t reach the top strings with my bow arm. I believed I had a shoulder or neck problem. Friends started giving their opinions of what they thought I had, including frozen shoulder and RSI. The possibility of not being able to play for weeks or months was very distressing. After seeing a sports medicine doctor, having numerous visits to a physio and giving bowen technique a try, I saw a different GP and was sent to see a neurologist. I didn’t get a direct answer from this initial visit and I believed I was wasting my time bothering with a follow up visit. The possibility of MS was ruled out at this first visit and I hadn’t even considered the notion that there could be anything seriously wrong with me. I continued having physio.
My condition deteriorated over the next few weeks and I had difficulty walking and moving my arms and fingers. I was still very stubborn at this stage and I was continuing my teaching but becoming very frustrated as I became weaker. Mid-May I saw my GP who sent me straight away to see the same neurologist. He was annoyed that I had not had the follow up appointment the previous month. His nerve conduction tests revealed an initial diagnosis of Guillain Barré. I was in Royal North Shore the next morning, and following a lumbar puncture and further nerve conduction tests I was admitted. Over the next eight days I had five plasma exchanges. After the first one I had to have a vas/cat inserted below the collar bone to enable a good blood flow. By May 25th I was able to play my cello again. I thought that was the end of my problems as my strength returned quite quickly.On June 9th I had my first relapse with strong tingling returning in the fingers and arm restriction beginning. I had one plasma exchange as a day patient on June 20th but this had little effect. I was admitted to RNS on 30th June. An attempt to insert a vas/cat under my right collar bone was unsuccessful that evening. No X- ray was carried out following this procedure and I went to sleep feeling very sore and numb from all the local anaesthetic. The following morning I was not feeling well but I showered and returned to bed feeling rather out of breath. Another vas/cat was inserted on the opposite side successfully downstairs in theatre but it was discovered I had received a punctured right lung from the previous attempt the night before. A chest drain was inserted to fix the lung and I began plasma exchanges that afternoon. I was wondering at this stage whether the hospital was a safe place to be. A nerve biopsy was carried out a few days later. This confirmed CIDP rather then GBS as the diagnosis. A week later the lung had healed and four plasma exchanges followed by 24 grams of Intragram saw me finally discharged.