If you want to go further, the list of earlier posts is on the right hand side of the page and of course, for basic information, please visit the website (see link, top right)
The answers are not mine and I would suggest that some may stimulate discussion but that's a good thing; the more we research the disease, the better we can live with it. The questions and answers come from:
http://www.neuropathysupportnetwork.org/neuropathy-faq.htm
1) Why do my symptoms and pain seem to come and go?
Wow, I sure wish I knew, but EVERY neuropathy patient has had this experience. Be assured, It is not psychosomatic.
Neurologists confirm that there are acute neuropathies that come on suddenly and then the symptoms disappear. In other neuropathies symptoms occur, disappear and then return at the same level. Other neuropathies occur, disappear and then return at increased levels and in more places of the body. Others come, go and then go away for years only to return with a vengeance! The chronic neuropathies and polyneuropathy are often referred to as progressive polyneuropathies. The mystery is increased as there seems to be no rhyme or reason for these patterns. The only thing I noticed is that when I increased activity, I have increased burning and I would guess that this was due to making damaged nerves work. I am sure that there might be some very brilliant doctor out there who has some clue as to why this is true and if I find out I will post it in patient language.
Coming and going (remitting and relapsing) of symptoms with a neuropathy is a medically confirmed fact. Better recognized, the same is true of the symptoms of some forms of MS! You are not crazy.
2) Do neuropathy patients ever get 100% relief from neuropathic pain?
I am sure there may be a lucky few, but for most of us, if you get 80% relief from neuropathic pain, this may be as good as it gets. Further neuropathy research may provide more answers.
3) Do all neuropathies cause pain?
No. Often in the motor neuropathies there may be no pain, just problems with moving and controlling muscles.
4) Is neuropathy psychosomatic or a mental illness?
No. There is no one test that will reveal all Peripheral Neuropathies. With the emphasis on the objective for legal purposes in medicine, this can pose a serious problem for the neuropathy patient and the doctor. The symptoms may not be revealed in objective testing until damage is done to the nerves.
The nerve conduct tests, the EMG, the skin biopsy, spinal tap, blood work and other tests may give a trained neurologist clues to what may be occurring with your peripheral nervous system. A great Neurologist Dr. Menkes stated some years ago, “The neuropathy patient’s subjective complaints must be taken at face value, as this often is the only clue to the neuropathy early in the course of its development. Mutual respect between patient and doctor is demanded when caring for the neuropathy patient.” Unfortunately, such respect faces a medical system that demands objective evidence for testing, payment of insurance and proof of disability.
In the course of getting help with your neuropathy and dealing with a nightmare of symptoms, loss of purpose, loss of job, loss of meaning, changing relationships with family and friends, you may find yourself desperately in the need of help. Please do not even hesitate to ask for help from a trained Psychologist. They will help you find your way through the maze of emotions that you and/or your family are experiencing.
For those who may at times think life is not worth living with neuropathy, I am reminded of what Dr. Berman in his book states, “Suicide is a permanent solution to a temporary problem!” The temporary problem is often the loss of purpose, loss or change in relationships and loss of meaning for the neuropathy patient. If you discovered purpose, meaningful relationships and meaning in your life once, however difficult it may seem, you can rediscover them again. Do not hesitate to ask for help, it is there for you.
5) Why does neuropathy affect the feet first in many neuropathies?
Neurologists call this the length dependent affect.
If you think of a large electric transformer located in Boston with lines stretching all the way to California, it takes more energy for the current to reach California from Boston because of the length of wire it must travel. If there is a problem with the signal strength it is more likely to affect the receivers in California than in the Midwest or Boston area closer to the transmitted signal.
Since the feet are located at the far end of the nerves of the human body (California), the longest distance from the brain (Boston), it takes more push to get the signal to the feet and the signal from the feet to the brain. So if there is damage along the lines of the peripheral nervous system, it means that the feet will be affected before other parts of the body.
However, in some atypical neuropathies other parts of the body may be affected first because of the causes and location of the damage to the peripheral nerves in the upper body, so this principle is not absolute.
6) How does peripheral neuropathy differ from MS (Multiple Sclerosis)?
The symptoms are often similar involving difficulty in moving limbs, loss of position sense, strange sensations, and temporary paralysis of a limb and so forth. I remember the nurse who told me she one morning could not move her feet while driving and soon after was diagnosed with MS! I told her of the time I stood up and then could not move my feet and soon after was diagnosed with neuropathy. We call this temporary paralysis and it happens both in MS and in neuropathy.
It is important for neuropathy patients to be tested for MS to rule this out because of many of the similarities of symptoms.
The basic difference is that in MS, the disease damage is found in the brain resulting in the failure of the brain to transmit correct signals to the peripheral nerves, whereas with Peripheral Neuropathy the damage is to the peripheral nerves at the ends of the electrical system of the human body and the problem is in transmitting correct signals back to the brain.
7) What about muscle cramps?
Muscle cramps are common to neuropathy patients and Dr. Latov notes the use of tonic water with quinine as a possible option. Other patients have had levels of potassium, calcium, salt, and other substances critical to proper function of muscles, tested to see if they are low. Patients have also found that eating a banana at night keeps the cramps away, or eating a Tum to increase calcium, or eating salty olives or pickles if your salt levels are low work. If you take a diuretic, muscle cramps are common and may require supplements.
A patient with severe muscle cramps should report this to his/her doctor for evaluation.
8) Is peripheral neuropathy a disease?
Yes. Webster defines a disease as “a particular destructive process in an organism” and a medical dictionary defines a disease as “any deviation from, or interruption of, the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown.” With this definition of the word, peripheral neuropathy is a disease.
Conversely, it is understood that in the medical field of research and the clinical approach to the patient, neuropathy is NOT seen as a single disease, but a clinical entity.
Dr. Bruce Carruthers, MD, CM, FRCP (C) notes the clinical approach important to research in his article - “The Importance of Clinical Definitions for Defining and Studying Syndromes”. “A syndrome involves determining the symptoms and how they interact, and how a cluster of symptoms interacts as a group. This establishment of this interaction is essential in clinical practice (and in research).”
Yet in the real world of the neuropathy patient where the public understands a disease, but not a clinical entity, funding for neuropathy research is difficult, as the view persists that neuropathy is JUST a symptom of another disease so funding is too often dedicated to these diseases. Consequently if the patient does not have one of “those” diseases, too often in the clinic the conclusion is that the patient could not possibility have neuropathy!
If medicine fails to identify or recognize the disease or causes of neuropathy which have only advanced recently beyond the well known causes such as diabetes, aids, alcoholism or possibility a virus or a flu shot with a live virus, this approach leads to misdiagnosis, failure to diagnose and treatment of neuropathy patients before damage is done. This failure occurs when the definitions of a clinical entity are not updated as research improves or is not done at all, blocking clinical progress when retained too long, as noted by Dr. Carruthers. “Thus critical and definitive dynamic features of the actual clinical syndromes, as lived by patients, have been ignored in these research definitions and even if mentioned have been downplayed.”
As long as peripheral neuropathy is publically viewed as JUST a symptom of another disease process, given the value to research and the clinical approach of seeing Peripheral Neuropathy as a clinical entity, we will struggle in our attempt to fund neuropathy research, struggle in our attempt to eliminate the word “idiopathic” from the vocabulary of the neuropathy patient and struggle in attempts to discover better tools for diagnosis of the disease of Peripheral Neuropathy as in affecting a major component of the human body.
I wish I knew the answer to this dilemma between what research and the clinical approach must consider and the real world of diagnosis for the neuropathy patient. Too many in and out of the medical system have poor preconceived attitudes toward neuropathy. This may in part be due to the lack of clinical training and the refusal to call peripheral neuropathy a disease in the sense of the standard definition of that word. The idea that it is JUST a symptom of some other disease, feeds this poor attitude and the temptation to not take the disease seriously when the known causes are NOT present in the patient when they present to the clinic for help.
These unhelpful attitudes toward neuropathy often delay funding of needed research, prevent Medicare payments for neuropathy testing, limit clinical training in medical schools, preventing better thinking about this disease. Informed neurologists admit that they spend very little time on understanding the clinical approaches to patients with peripheral neuropathy. Outdated approaches to neuropathy may help in sorting out causes and treatments, yet it limits thinking. Consequently we are left with poor attitudes toward neuropathy and the failure to fully understand its impact as a major disease affecting millions of people of ALL ages.
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