More Neuropathy

Recently the neuropathy has moved to my hands. A year ago I felt numbness in two fingers now I feel it in both hands. Not all the time just most of the time. The worst times are driving and on warm days. When I reach into my pocket for a coin I have to look to be sure what I grabbed, buttoning a shirt is a new challenge.

One thing I have discovered is that exercise makes a difference. I go to a gym three days a week and ride a road bike about three days a week. Everything feels better and less numb if I keep moving. I guess keeping the nerve impulses firing is good. Cool weather is also a plus. The numbness seems worse in warm weather and summer is coming, fortunately I live near the coast and coastal fog.

More on Neuropathy

Tuesday I ventured to UCSF to be examined by one of their neurologist. It has been about five years since my last visit. This gives me two neurologist to match notes on how to treat me. Unfortunately my condition is rather rare. Neurologist one says he has seen maybe 4 cases in 30 years, neurologist two says he has seen maybe one in five years. That doesn't make for a wealth of historical records on the disease. Another blood test is on the agenda to see where the blood marker are. After being treated with rituximab a few years one of the blood markers returned to normal.

It appears I am heading for another treatment with rituximab.

Auto Immune

I'm not sure what is causing my autoimmune neuropathy but I can guess. Recently I read a book about such diseases and one comment stuck with me. Almost every adult in the U.S. has traces of 100 chemical compounds in their body. These are chemical compounds which were unknown a century ago. They come in our food, water, air, drugs, lotions, soaps, cleansers and so on. Any one of these chemicals could be mimicking a foreign substance that produces the bodies immune system to react or possibly stimulates cancers to grow.

My disease strikes males in the sixth decade of life, plenty of time to accumulate a wide variety of chemicals in system and time for them to fester until the body decides they need to be eradicated. The incidence of my disease is low and I imagine it will be years before someone discovers a cause and a cure.

I'll be seeing my neurologist again next week. I think I'm somewhat of a mystery to him, just as the cause of this disease is a mystery to me.

More on Anti-mag

Anti-MAG neuropathy is an autoimmune disorder caused by an immune attack directed against peripheral nerve myelin. This condition was first recognized in 1980. More than 80% of patients are males and the disease onset is almost always in the sixth decade or later. Part of my diagnosis was the result of a blood test that show high levels of a paraprotein. Treatment with rituximab lowered two out of three blood markers with a noticable change in the neuropathy. That was almost five years ago and I haven't had a blood test or been treated since that time. I am due to visit my neurologist soon but I doubt he will recommend any treatment or tests, preferring to leave well enough alone. Information on the internet says there is little or no progression over many years. I suspect this a rather rare disease with most neurologist seeing few cases over many years.

That leads to this blog, I don't know where the disease is going, more information or personal accounts are appreciated.

Reading about neuropathy

Neuropathy has been with me for 6 years. Fortunately I only have numbness, not pain, in the legs and hands and can lead an fairly normal life. I do have trouble at times with my balance but I try to hide it from friends. As I said in the previous post there isn't a wealth of information about my disease. Here are a few books that might shed some more light on the disease and treatments. I found them in my local library. There are two by John A. Senneff, "Numb Toes and Aching Soles" and "Numb Toes and Other Woes". A third book is by Norman Latov, "Peripheral Neuropathy: when the numbness, weakness and pain won't stop". I have yet to read the last book but I will soon.

Neuropathy

There are 20 million people who suffer from autoimmune diseases. I am one of them. I have anti-mag neuropathy. My symptoms are: very tender soles of the feet, numbness from my feet to my knees and lately hand and finger numbness. The symptoms, numb shins started about seven years ago. I have been treated with rituximab about four years ago and there was some improvement. My doctor has not recommended more or different treatment. It has now been seven years since the first symptoms started when I was 60.

The reason for this blog is simple. My condition was first recognized in the early 1980's. There is not a wealth of information, specifically anti-mag. I would like to compare notes with others who have the same affliction about: onset, diagnosis, treatment, progression, activity levels, doctors.

With all that said I lead a normal active life. Being active makes the neuropathy feel better, doing nothing makes me feel worse, but more on that later.