My neuropathy experience began in late June 1993, but it was not
until April 1998 that I was eventually diagnosed with PDN. I began with unusual feelings in my feet and, to a lesser extent, in my lower legs. Walking had become very uncomfortable and left me with feelings of very sprained or tightened feet muscles. This was accompanied by "pins and needles" in my toes and the soles of my feet, whilst at other times there was also pulsing, twitching and "electric shock sparkling". My feet were often cold even during very warm weather, although they could also become burning hot at unlikely times. There was a great deal of pain too. Some feelings were also experienced in my hands. These and other symptoms, I later learned, were classical symptoms of peripheral neuropathy. If you recognise the symptoms above do not immediately presume that it is the same neuropathy as mine! Check the peripheral neuropathy page first.

Sadly a local hospital physician badly misdiagnosed me, appearing only to have "heard" 2 of the symptoms I reported. I had my own suspicion that it was a neurological problem, so I had to negotiate my own way to a regional University Hospital's neurological department. There the initial peripheral neuropathy diagnosis was obtained. The clinical diagnosis showed a mixture of demyelination and axonal degeneration loss. Attempts to discover the specific type of neuropathy became frustrating for all involved. There were unavoidable contradictory results from the diagnostic measures. I agreed to a "last resort" sural nerve biopsy, an invasive and possibly consequentially risky procedure.

This biopsy initially appeared to confirm CIDP - Chronic Inflammatory Demyelinating Neuropathy - as the disorder. It was decided to try the cortico-steroid Prednis(ol)one, at a strong dose level. Unfortunately I had a bad time with side effects and the treatment had to be halted quickly. The setback led to a re-examination of the available evidence. My diagnosis was then varied to PDN, of the paraprotein IgA. It was also decided that at this late stage any attempted treatment presented more potential risks than benefits. Since then I have had supportive treatment for the symptoms, especially to cope with the pain and the tightening of the muscles in my feet and legs.

DAY BY DAY. No two days are alike. In my IgA form of this neuropathy the motor strength is only mildly reduced, although there may still be muscle weakness and loss of strength. This does not lead to obvious functional impairment, but this muscle weakness still leads to significant problems that are not apparent to casual observation. There is frequent tightness/muscle contraction or cramping in my feet, ankles and lower legs. The guiders in my feet tighten and pull my toes off the floor, a painful and uncomfortable experience that makes walking uncomfortable. My feet are often inwardly sore and very painful as the muscle and general tissue becomes disturbed. I spend most of my time indoors in my bare feet! Now by late 2004 the neuropathy has progressed and walking on any firm surface is becoming very uncomfortable.