Neuropathy Timeline

Here is a time line of sorts on my neuropathy.

Age 60: sore feet, noticed a functional difference in my feet when I ran, felt like I was wearing socks all the time.
Age 62: all symptoms getting worse, went to the doctor, chiropractor and podiatrist trying to figure out what was wrong.
Age 63: sore feet, numb shins, went to the neurologist. Had the following tests: nerve conduction, spinal fluid removed, blood test sent to Athena Diagnostics. Bad results on SGPG Elisa, MAG Elisa, MAG Western. Officially diagnosed with CIDP.
Age 64: following an examination with another neurologist I was treated with rituximab, once a week for four weeks. I noticed an improvement within the month.
Age 65: Blood test for SGPG Elisa came back closer to normal, MAG Western was normal. At this point I still had some numbness in my lower legs and feet and the soles of my feet were very tender. There was a very slight numbness in two fingers of my right hand.
Age 66: at this point I could walk okay but not hike any distances, I could ride a bike long distances and ski. There was very little progression of the disease during this time.
Age 68: started noticing increasing numbness in my hands, it has now spread so both hand which feel tight and numb. Another blood test indicated the SGPG Elisa was much higher than the initial test and MAG Western returned to levels of the original test. Clearly the disease was back. Two months ago I experienced a severe loss of balance which they attributed to an inner ear virus. I believe it was caused by the CIDP. Right now walking is difficult, skiing or riding a bike is out of the question. I also experienced a drop in blood pressure after riding a stationary bike, which I believe was caused by the CIDP. In two days I will begin another series of treatments with rituximab. I'm hoping it will work and I will get back to some sort of normal.

Continuing Saga

I found out this morning that I was approved for treatment with rituximab. I hope the treatments begin soon. In the last two months my balance had deteriorated and my hands are more numb. If the treatments work like last time I should feel like this disease is in remission for a few years.

Anti Mag Neuropathy

I was finally referred to an oncologist and we discussed treating my neuropathy with rituximab. I was treated with rituximab six years ago and I noticed an immediate improvement which was validated by improved blood tests. The problem is the cost of the drug. Normally they do 4 treatments over 4 weeks and it can be as much as $40,000. When I had my first treatment my group health insurance covered the cost. Now I am on Medicare and there is no guarantee they will pick up the cost. In some cases I am told the drug companies will replace the drug at no cost. The only cost to me would be office and nurse time which is still expensive. To reduce costs the doctor and I agreed to try just two treatments. They were to give me a call to set up the treatment and of course that hasn't happened. Frustrating!

Test Results

Three of my tests came back with no change or very little change from previous years. Another blood test came back with a huge change. There were three blood markers used to identify my neuropathy, one is supposed to negative and is positive, a second should be less than 1600 and is 12800, a third should be less than 3200 and is 819200. The last one is way off the charts in my book and 4x the size when I was first tested.

I was treated with rituximab and that brought these blood marker almost back to normal. That was 6 years ago. So naturally I am thinking about another treatment with rituximab with the hope that it will slow down this disease like it did the first time.

I'm not completely surprised about the numbers as the neuropathy has spread to my hands in the last six months. It is a lesson in being more forceful with the doctor, I thought we should have done the blood test a year ago. When the doctor returns the first of the month we will have a discussion about future treatment i.e. rituximab.

Continuing Saga

Today proves that I need to keep after my doctor. After waiting a few weeks to hear from him I scheduled an appointment. There are two more tests recommended and requested by my doctor and I was never contacted. His office failed to contact me and the doctor never followed up to be sure it was done. Mistakes happen but I'm glad it wasn't life threatening.

Two more tests, one blood test that will compare three blood markers that were out of whack five years ago indicating my neuropathy. Two of these markers returned to normal after being treated with rituximab but I suspect they are abnormal now. The second test is for immunofixation and electrophoresis protein. I'll have to google those terms and education myself. The doctor didn't specify the reasons for the second test.

The doctor did say that CIDP is not very common and CIDP with sensory deficiencies is even less common. Reading into that I would say there is not much history and knowledge about the disease nor is there any pattern of successful treatment.

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.