Where it all started!
My neuropathy experience began in late June 1993,but it was not
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.
The tight or cramped muscles in my feet are painfully uncomfortable and this tightness has become very problematic in bed. The toes and related muscles now become tighter, probably due to confused message transmission, and sleep in bed often becomes almost impossible. With my feet down on the floor they become more relaxed, so I often sleep in my recliner chair. Going upstairs can sometimes be difficult, as "pushability" becomes virtually non-existent. The pain can often be described as "gi-normous". There are periods of crisis "downs" that appear to be triggered by particular weather conditions, as the local or ambient atmospheric pressure falls, only describable as "mini-lows". Read on page and my site "Nerve Pain and the Weather".
Yet I am very fortunate in many respects. The motor damage is quite slight by most standards so I do not have the disability that is the lot of some. The sensory damage is much greater. The nerve or neuropathic pain is a significant part of every day, varying from day to day and hour to hour. Often it can be endured but some days become an endurance test. Even the neurontin or gabapentin pills do not sufficiently dull the testing experience. Yet life must go on otherwise one may miss something! "My grace is sufficient for you" is a New Testament verse from 2 Corinthians that I have often found to be encouraging.