All about Guillain-Barré Syndrome - Ken suffers from PDN/MGUS, and describes his symptoms and treatment.

My neuropathy experience actually began in late June 1993, although it was not until April 1998 that I was eventually diagnosed with Paraproteinaemic Demyelinating Neuropathy.

I began with unusual feelings in my feet and, to a lesser extent, in my legs. Walking on firm surfaces had become very uncomfortable and left me with feelings of very sprained or tightened feet muscles, which extended up my legs. 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!

Unfortunately, after being referred to a Hospital Physician, I was badly misdiagnosed, even as to the general area of the problem which was to officially remain a mystery for 18 months. As I had my own suspicion that it was a neurological problem, I had to negotiate my own way to a University Hospital's neurological department.

It was there that the initial peripheral neuropathy diagnosis was obtained after appropriate diagnostic testing. The clinical diagnosis showed a mixture of demyelination and axonal degeneration loss. Attempts to discover the specific type of neuropathy led to a long period of frustration for all involved, due to unavoidable contradictory results from a range of diagnostic measures. I was kept well informed throughout this time. There was a strong suspicion as to the type of neuropathy, without the clinching confirming evidence. A "last resort" sural nerve biopsy was suggested, although this is an invasive and possibly consequentially risky procedure.

This biopsy appeared to confirm CIDP – Chronic Inflammatory Demyelinating Neuropathy – as the disorder. Although this was 54 months into the experience, it was decided to try treatment with the cortico-steroid Prednis(ol)one, at a strong dose level.
After a promising start, a chain of side effects kicked in and life became very trying, as my heart had to work overtime pumping blood round the flooded areas of my body. A warning note was sounded and the setback led to a re-examination of the available evidence.

My diagnosis was varied now 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
In coping with the disorder on a day to day basis, no two days are alike. In the 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 problems that are not apparent to casual observation. There is tightness in my feet, ankles and lower legs. The guiders tighten and pull my toes off the floor, a painful and uncomfortable experience makes walking uncomfortable and the tissue soon begins to become disturbed and painful. My feet are often sore and painful. I spend most of my time indoors in my bare feet!

There are great ups and downs. The "downs" are painfully uncomfortable and trying, especially from the tight or cramped muscles. This tightness has become very problematic in bed. The toes and related muscles now cramp forwards, probably due
to confused message transmisssion, and sleep becomes almost impossible. With my feet down on the floor they become more relaxed, so for years I slept in a settee corner on some nights. In autumn 2000 I bought an electric powered recliner chair, and this has proved to be a great boon. Going upstairs can sometimes be difficult, as "pushability" becomes virtually non-existent.

The pain can often be described as "gi-normous". At the worst downs I experience the problem in my hands. The "ups" are like experiencing musical grace notes in my feet! There are periods of crisis "downs" that appear to be triggered by particular weather conditions, as the local or ambient atmospheric pressure falls.
Read about this on my "Nerve Pain and the Weather" website.

The evidence of the past 12 months is that the neuropathy is slowly progressing. Pain is always present and the tightness in my feet goes on unrelieved.

FOOTNOTE
My feet still intensely dislike town pavements and supermarket floors. In good periods we have enjoyed walking, especially on springy forest trails. We find these in the German Harz Mountains area and in Sweden, two of our favoured holiday areas!
Unfortunately another serious health problem has put holidays on hold.

I am a member of the GBS Support Group (serving the UK and Ireland). I urge any GBS, CIDP, PDN or related disorder sufferer to contact this or a similar group in their own country.

Ken Sawyer
(adapted from Kens website, with permission)