PARANEOPLASTIC MYELOPATHY & ACQUIRED ATAXIA

ROBERT B. DARNELL M.D., PhD ROCKEFELLER UNIVERSITY RESEARCH HOSPITAL

In early1994, I noticed my three middle toes on my right foot would get numb often and did not attach much attention to it, just figuring I had a pinched nerve. This was not the case, as I found out much later.

I was playing pretty good golf, and had become totally addicted to the game, when, one day while on the course, my right knee buckled and I went down on the #15 green. Thinking I just had a trick knee, I used my putter for a cane, and finished the round.

While at work one day, I had a sensation which was new and very painful. Violent muscle spasms in my back.I saw a Dr. here who sent me to a neurosurgeon in Little Rock, as he too thought, it was a pinched nerve in my spine..

I spent time in Babtist Hospital there going thru a battery of test, and eventually finding that I had a small spot on the upper lobe of my right lung. The Dr. insisted on a needle biopsy. This revealed lung cancer. It was less than a centimeter and was surgically removed.

Since there was no evidence of any other cancer, I was given no chemo or radiation, and have had no reoccurance. I located and confered with, the leading research Dr. in the USA, who is pictured at te top of this page, and went to the RU Hospital for diagnosis and evaluation.I spent one week in NYC at RU Hospital, which works with with Sloan Kettering Hospital, and underwent numerous tests.

Medical research has since found that I am probably immune to tumors, as my system will not let them grow. However, this has a terrible downside, which results in what I have.

I recovered well from the surgery, but my ability to stand and walk had been severly impared, and became increasingly worse.

I went to my family Dr. whom I had ask for an appointment recomendation to MAYO clinic He told me he would not waste Medicare money that way, as I was just panicing. Needless to say he is no longer our Dr.

My husband and I got in the car and drove to Rochester Minnisota and, unannounced, walked into Mayo Clinic, which, after a lot of waiting we were finally seen.

Having undergone every kind of test they had, I was diagnosed with PARANEOPLASTIC SYNDROME.

We came home not knowing much more than when we went there, and my new family Dr.who admitted he knew nothing about this, sent me to Cox Hospital in Springfield for evaluation and therapy. A neurologist there told me I had damaged spinal cord cells. He also ordered PLASMAPHERISIS, which is a process where the plasma is removed from your blood and new plasma put in. Similar to dialysis. This was unsuccesful.

I found out after seeing Dr. Darnell in NYC that my own antibodies which had kept the cancer so small and from spreading, were attacting the only similar protine in my body which is in the spinal cord. By this time my body had lost all feeling from about the waist down.

I still recieve out patient physical therapy, and have maintained my flexability and some strength in my legs, which is not enough to stand up yet, but I am still hopeful. Medical Science is progressing in the field of neurological disorders, and who knows, it may be in my time. I Hope.

After numerous Hospitals and Doctors, I am confined to a wheelchair. I lost my business, and my husband is unable to work due to having to care for me.

This has been a MENTAL, PHYSICAL and FINANCIAL struggle for both, my husband, and I.

Dr. Darnell of Rockefeller University still maintains contact with me, and I still send him blood samples upon request.

Me NOW This page will not be finished until I'm on my feet again. Meanwhile, the following two scenes are me and this disease,

I'M THE RABBIT

After being in a wheelchair for seven years now, I have learned a lot of lessons

"THE HARD WAY"

This is being written for the benefit of the person who may have an unexpected devastating illness occur, and to outline ways to get help without depleting your entire retirement funds, which happens all too frequently. I speak from having experienced just that.

Now that it is too late to recoup funds, I find that I am part of a large group of retired people who have,

"FALLEN BETWEEN THE CRACKS"

We have spent all of our savings on Doctors and Hospitals, who may or may not know what to do for your particular ailment. They do however know how to collect medicare, and dispense expensive drugs. The first qestion is often, "Who is paying for this?" If you have Medicare or Medicade with a supplement coverage, they are anxious to take you. This does not however, assure you of quality care.

The best thing I have discovered thusfar is the PCD support group. I will send you their email address upon request. THROUGH THEM YOU CAN LEARN OF THE MANY SERVICES AVAILABLE TO YOU DEPENDING ON WHAT STATE YOU LIVE IN AND MOST OF THEM ARE AT NO COST TO YOU. THIS IS ONE THING YOU USUALLY LEARN TOO LATE. I DID. Any one in the support group will be able to help with some answers as a rule. One thing for sure,

WE'VE BEEN THERE, DONE THAT.

Email: tiger2@cox-internet.com