The first symptom of my PN came in July 1999. My feet became very sore. I didn’t think much of it at the time: Just figured I was using them too much. By August, the pain had increased and my feet began swelling. I had always had big feet, but now had to locate a pair of shoes in a size 13EEEEE to accommodate my big boats.

When the new shoes were delivered, the pain had become worse. The shoe salesman suggested I see a podiatrist, but I had spent my entire life (I was 51 at the time) afraid of doctors so that wasn’t an option. In mid-October the pain was still worse and I began stumbling a bit. I thought there could be no other pain as bad as this --turns out I was wrong-- but still resisted seeing a doctor until I fell down the stairs at home earning my first ambulance ride and a short hospital stay.

While in the hospital I was seen by a neurology intern--it was a teaching hospital--who made an appointment for me two weeks later. It was at that appointment where I first heard the words Peripheral Neuropathy. The term was so foreign to me I had to write it down so I could refer to it when the topic came up. By this time my gait had become quite visibly worse.

A couple of weeks later I was given my EMG and muscle test. For those of you who found an EMG difficult, I can only say "you’re lucky you didn’t have mine." The doctor was training two residents. As the test began he was called out of the room. He told the residents to continue, that he’d be back in five minutes. The test began and I soon found myself convulsing and airborne from the electrical shocks. I didn’t find out until the doctor returned FORTY-FIVE MINUTES LATER that the residents really didn’t know how to do the test and had the settings far too high. In addition, they didn’t know how to record the information, so almost the entire test had to be repeated.

This SHOULD have been my first clue that a teaching hospital wasn’t for me, but I was naive. After the tests the doctor took the time to explain the results and the disease. I had a demylenating neuropathy both motor and sensory. The doctor said he was shocked that I had PN when I was so "young" (flattering) and not diabetic. He also told me it was a slow moving disease and that I might--over a long period of time--end up with numb feet and lower legs. He added that eventually it could go to the arms and hands.

I should add here for your future reference that this doctor is a so-called PN "expert" (as if there is such a thing) at a major medical center. The man does research, trains residents, and offers seminars for other doctors interested in PN. Turns out all the information he gave me was either short-sighted or totally wrong, but I wasn’t to know that until I found the Neuropathy Association.

I still remember the Thursday night in late November ‘99 that the horrifying electrical pains began. I now knew there really was worse pain than I had previously suffered. I never understood the term "breakthrough pain" as it has been discussed, It did break through all at once, but it began with twenty or thirty of the horrifying electrical shocks, increased to about fifty in both feet and ankles, and never let up for the next seven months. There was never a moment’s respite from the pain. That first night I was certain I would die and went over my funeral plans with my wife. No sleep at all that night. The next morning my wife called the neurologist, but he never returned my call. By Saturday, I begged my wife to find a doctor somewhere. She suggested we wait until the doctor was in on Monday. I truthfully assured her that if I got no relief I would kill myself before then. My wife was able to get hold of a neurology intern in the teaching hospital. He prescribed a low dose of neurontin. The pain was so bad, the small relief provided by the neurontin brought some hope. Calls continued to the neurologist for the next eight days with no success. Finally my call was returned by his nurse who told me he was only in the clinic two days a week (teaching and researching the rest of the time) and could not be bothered with calls from patients or interruptions from his nurse. Fortunately, I had an excellent psychiatrist who at least understood that a higher dose of neurontin could be ordered.

By mid December, it was obvious that I should no longer drive as I had no feeling of the car pedals. My days had become round the clock pain with almost no sleep. I had no ability to sit up and work was out of the question.

I explained my neglect by the neuro to a friend who is a podiatrist. He simply said "get used to it, that’s health care in this country." Fortunately, I was soon to find he was wrong. Financial circumstances made it necessary for us to change to an HMO in January. This was not acceptable to me as HMOs have such a bad reputation, but we had no choice. This time I started the right way with the new doctors: I interviewed each during the first appointment. My demands were simple, but I now knew they weren’t necessarily agreeable to some doctors. I simply told each that if I called, I expected my calls to be returned promptly; if tests were given, I wanted the results; and if I had questions, I expected them to take the time to answer them. I ended up with a simple "if this is not suitable to you, please refer me to another doctor." When I see so many having problems with uncaring doctors, I realize how difficult it is for many of us to really talk to them. but to me it’s a must.

No causes were being found for my PN despite other tests. Finally, the neuro wanted to do a nerve biopsy. I knew nothing about this test as I hadn’t discovered the NA BB yet, but finally had a revelation which has been very helpful to me: I simply asked him how the test would aid my treatment. He said it could help solve the question of cause, but would in no way help treatment. I told him NO. What a profound idea!!!: I was being tortured by useless tests for no reason other than to find an untreatable cause. Note here, I realize knowing a cause is important to some, but to me it impeded my getting on adapting to my new life of pain and losses. Since that time, tests for the treatable PNs have been repeated, but the doctor gives me no new ones. Believe me, if you want to see a doctor in total frustration, you should see mine....First of all, he’s used to patients demanding even MORE tests; and secondly, he’s young in the business and I’m likely to have the only case of PN this severe he’ll ever encounter in his practice. I’d provide him with great boasting rights when he’s with his colleagues.

I was now falling down every three or four steps. I doubt that there was anything near me which I didn’t either trip over or fall on nor any people who didn’t stare at me. The walker was the only way I could go without the threat of serious injury. Ironic that my father-in-law was in his seventies when I met him and wouldn’t use a walker because it was for "old people" and here I was having just turned 51 depending on the wretched thing for any mobility I might have. It was at this point that I first went to physical therapy: My goal to find a way to walk on my own. Several sessions followed with no help at all. There were no exercise I could do to enable me to walk on my own.

Finally, in March, the swelling began to subside--edema of the feet the neuro said with no known treatment. It wasn’t until the swelling went down that I realized how much pain that alone caused. I was now left with simply the barrage of electrical pains constantly eating away the nerves in my feet and ankles.

By April, the swelling was gone but my muscles had noticeably weakened. I could now only go a few steps even with the walker. Back to physical therapy; the goal this time to be able to walk farther. On the third treatment, I broke two ribs very severely. The therapists concluded that the only answer for being mobile more than a few steps was either a scooter or an electric wheelchair. Talk about depressing....The therapist favored the wheelchair with the understanding that if I lost the use of my hands and arms it could still be driven. That was too much for me: A big, bulky, ugly cripple-mobile....I settled on the scooter as both neuros had assured me that when the hands and arms got bad they would still work. It was now after a beautiful spring and the beginning of a gorgeous summer. I was stuck in my little prison on the couch viewing it all through the window. It took our wonderful HMO almost two months to approve the scooter. By that time I had abandoned the idea of building a wall against the world by decorating the scooter with streamers, stickers, and a large rubber horn. The day the scooter was delivered, it could have been a Mercedes: I was thrilled. That same day I went cruising the neighborhood: Finally there was a bit of my long-lost freedom.

The scooter brought an appreciation of what handicapped people had done before me. I’m ashamed to say that I really seldom thought of disabled people very much until I became one. I also learned how unseeing and uncaring many in the totally-abled world can be.

In fall, most of the nerves in my feet and legs had been totally eaten away. I had been told that with the loss of the nerves would come a feeling of numbness. My idea of numbness was no feeling at all. That turned out to be untrue. The nerves in the skin-only could feel sensations but apparently the feeling of pain is at a lower level. The horrifying pain was replaced by a massive discomfort almost as bad. Because the skin could feel, it was as though the feet inside them was filled with jagged rocks. It remains so today. Meanwhile it was time to take action on my part. I realized that if I wanted to rid myself of the walker and stop falling down every few steps, I had to re-teach myself to walk. No easy task this as the brain no longer had a clue as to the whereabouts of the feet plus walking is almost as reflexive as blinking the eyes. Relearning to walk meant to learn to be conscious of every step I took; to watch my feet so that I would know where they were. The process took months as I learned to keep my feet very close to the floor, take a wide stance, and never try to stand still as that meant a certain fall. The neuro didn’t like my approach as keeping the feet so low might injure me. The physical therapist didn’t like it because it wouldn’t exercise the leg muscles as much. Neither presented a decent argument as if I lifted my feet I was in danger of injury from a fall and the leg muscles got more exercise from shuffling twenty steps than from falling after three.

As I write this it’s been nearly two years since the first pain and I’m a profound "crip" (I like that term but it offends some--especially some physically abled; to me it tells the true situation rather than creating more "acceptable" words.). The PN has now spread to the top of my legs; is getting quite severe in the hands and wrists and has spread to just below the elbows of each arm. As with the feet, it’s now time to start watching every use of my hands as otherwise I have little clue as to what they’re doing. I know the PN will worsen at whatever speed it chooses--apparently quickly.

Still, my message here is NOT how bad PN can be, but rather to assure all it can only take some physical abilities; it CAN’T take away the joys of life--unless we let it. I made a huge mistake in declining the offer of narcotics when the doctor suggested them: I was too afraid. I now know that should the worst of the pain begin in my upper limbs that these drugs are fairly safe if taken as directed. At the same time, I know that the more drugs mess up our minds--and they ALL do--the less we are able to make the necessary choices necessary to really live with a serious physical disease. To me, the only answer drugs can provide is reducing the pain to the maximum I can tolerate. Any more than that and I’m seeking relief in drugs which can be found in much healthier places.

I’ve learned too that the REAL treatment is to get out of my pain and seek the full life PN can’t take away. Several months ago I heard a speech by a woman with very severe MS. She is so crippled that in order to speak she had to be propped up on her scooter by her husband. The woman had a very simple solution to physical disease which I had already begun to discover for myself. The answer, she said, is to surround yourself with love, grow spiritually and to reach out and help others. SO PROFOUND yet so simple. We all have some people who love us. I must ask myself, "am I feeling so much self pity that I may be turning them away, or can I do more for them?" Spiritual growth comes wherever we find it: In religion or elsewhere. I don’t share my beliefs with strangers and am saddened when some seem to think they have THE solution. Today, I know that my body will continue to fail. I also know that if I continue to do the things that work, I’ll be just fine. And so will you... Craig, craiglamb@voyager.net

The Craig Lamb Family