There has been some discussion about the use of spinal taps in connection with PPS. Tom quoted Dr. Halstead as stating that there is NO indication to do a spinal tap to "diagnose or treat" PPS. I would agree with that statement, no problem. However, there is no definitive test with which to diagnose PPS, except possibly an EMG can be a helpful objective test. The diagnosis of PPS is a CLIINICAL diagnosis, meaning that it is based on medical history, signs and symptoms, and physical examination including a neurological exam. PPS is a syndrome, a collection of predictable signs and symptoms that many individuals who had acute polio are now experiencing that is more than coincidence. The spinal tap offers a window of information about the brain via the spinal fluid much as the blood, urine, saliva, gastric fluid, and other body fluids offer for various areas and functions of the body. Examination of the spinal fluid can be extremely valuable in the diagnosis of various CNS diseases, particularly infectious disorders or other conditions of the brain and spinal cord.
One of the diagnostic criteria for PPS is to exclude other causes of the familiar symptoms such as musculoskeletal pain, new motor weakness, and fatigue. Many disorders can cause one or all of these symptoms. To me one of the most helpful differentiating criteria in the diagnosis of PPS is a history of acute poliomyelitis years ago. Any doctor should at least think about PPS once he/she obtains a history of acute polio in connection with these symptoms. There still would likely be some indication to rule other possible causes of these symptoms such as some infectious, metabolic, cerebrovascular, dementing disorder. A spinal tap may be part of this rule out process. Many of us have difficulty with undergoing a spinal tap because of scoliosis, spinal stenosis, or lumbosacral back problems. For this reason, many of us cannot have spinal anesthesia for surgical procedures. All I am trying to say is that an examination of the spinal fluid may be a reasonable test to request in the process of considering some other CNS disorder, even in someone with PPS, but not to diagnose PPS specifically. All of us are in an age group where many things can happen to us. PPS'ers do have strokes and can get meningitis or a brain abcess as anyone else.
For myself, any doctor who is ignorant about the existence of PPS and requests to do a spinal tap on me, I would not sign the release form until a doctor who is quite familiar with PPS had examined me and explained the reasons for requesting the spinal tap. If I am unconscious, I would hope a family member would do the same before signing the release.
The diagnosis of acute paralytic poliomyelitis was made by the history of a gastroenteritis along with fever, headache, and stiff neck followed by evidence of a flaccid paralysis. A spinal tap was done as an additional diagnostic tool. The spinal fluid usually revealed an increase in white blood cells (particularly lymphocytes) and a slight elevation in the protein. If all of these factors were present, then the dreaded diagnosis of polio was made. Symbolically, for many of us, the memory of the spinal tap was the diagnostic clincher. I remember at age 11 when I contracted polio that I had already suspected that I had polio before the spinal tap. I had seen many movie clips in the neighborhood theatre during the March of Dimes drives depicting the early signs of polio, one of which was a stiff neck. The first day of my illness I woke up that morning with a stiff neck and the thought of polio entered my mind. I wish my diagnostic skill at that young age had been wrong.
I offer the above statements somewhat in defense of the medical profession in our country. There have been lots of changes in health care and much of which many doctors do not like. However I still believe that the vast majority of doctors are not ignorant, incompetent, or stupid. Otherwise why would so many young doctors greatly desire to come to the USA to receive their training and why do many patients worldwide look to the USA for help. I would even be so bold as to say that more is known about PPS by doctors in the USA than other nations. Also, reality tells me that more PPS clinics and more doctors familiar with PPS are increasing each year.
We all are willing to try anything that seems to help us whether it be various alternative treatments or conventional Western Medicine. I believe that it will be conventional Western Medicine that will provide the best hope for us for an effective treatment. For example, if a medical researcher does a double blind study on Valtrex in treating PPS and finds conclusive evidence that Valtrex is effective against PPS, you better believe that we all will want our doctors to immediately prescribe Valtrex as fast as possible, and if we had any extra funds we might even buy stock in the GlaxoWelcome drug company that makes Valtrex.
Enough for today,
Henry Holland
Richmond, Virginia, USA.
Henry4FDR@aol.com 10th May 1997