One issue neuropathy patient’s face is the fear that their neuropathy will grow progressively worse. Neurologists call this a progressive polyneuropathy. The truth: no one really knows if your neuropathy will worsen, stay the same or disappear. A neurologist shared that this may have more to do with the underlying cause of the neuropathy than any other issue.
I speak of this very fear in chapter twelve, Focus, in the DVD “Coping with Chronic Neuropathy”, and if you have not viewed this chapter, I suggest that you do so. The viewing will provide a better perspective.
Neuropathy patient fears are often increased by the coming and going (remitting and relapsing) of neuropathy symptoms. Too many doctors still fail to understand this reality for the neuropathy patient, yet these patterns are a medically confirmed fact. Better recognized are the same patterns for some forms of MS (Multiple Sclerosis)!
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 polyneuropathies which increase for years 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, pain or other symptoms and I would guess that this was due to making damaged nerves work.
For years between the emotional highs when my symptoms remitted (“Hurrah, they’re gone!”) and the emotional lows when they relapsed (“Oh no, they’re back!”), I was tempted to worry that my symptoms were going to worsen and guess what, they did! But one has to ask the question, did the energy spent on worry change anything? No! What I re-discovered was what I learned in Sunday school. It was better to spend my time and energy finding a doctor who was trained in the clinical approaches to neuropathy then to waste energy on worry. I needed a doctor, not worry, to focus on my symptoms, a doctor working with me as a partner, while treating the symptoms and looking for the cause. I needed a medical Sherlock Holmes, not time worrying about what might happen.
This approach maintained a focus on self empowerment by learning all I could, while prodding the doctors with questions that helped them think and act. The most important question for you is not, will my neuropathy get worse, but what is the underlying cause? Spend your energy looking for the cause, as no one knows if your neuropathy will worsen or not.
I know that for so many of you neuropathy has been a progressive illness which worsened over the years. Conversely, my progressive polyneuropathy has not killed me, for my neuropathy symptoms began at age 31 and I am now 72. Thirty-one years into the symptoms with a million denials with a diagnosis beyond crazy to idiopathic neuropathy, I was given one drug which drove me to talk backwards and then another that reduced pain by 80%. Five years later with the miracle of IVIg I am able to keep breathing and the chest muscle spasms stopped while reducing other mind numbing symptoms. This took many doctors, lots of research and knowledge, while asking good questions and giving doctors documents from experts. It may have been fear and anger which drove me forward, but it was these focused actions that brought help, not dwelling on my fears!
It is important to know which issue is important as you set goals for getting help. It is important to focus your energy on learning, getting help with symptoms and finding the cause and solutions for the diagnosed illness. I do not mean idiopathic neuropathy (of unknown cause). It is very difficult to find a solution, other than for symptoms, when the neuropathy is of unknown cause. Many times it is a matter of the doctor taking the time, helping the doctor think and pushing the system to do the testing that is now available.
Tests that are available will with good thinking and clinical training allow the doctor to know if the neuropathy is large or small fiber, motor, sensory or autonomic, axonal, immune-mediated, demyelinating or inflammatory and these clues can lead to a possible identification of the cause that is more helpful than idiopathic. Unfortunately many neuropathy patients are simply tossed into the pile of idiopathic and sent home.
RESOURCE: Read Dr. Scott Berman’s book, as this book may provide insight and is available at the website www.neuropathysupportnetwork.org RESOURCE TAB. Dr. Berman has untreatable CIDP (chronic inflammatory demyelinating polyneuropathy) and his book speaks to all neuropathy patients as one who has been in our shoes with many neuropathies. Dr. Berman empowers us to face creatively the emotional issues we ALL face in chronic illness.
PATIENT TO PATIENT – Disclaimer: Patient to Patient articles are intended to be educational, not diagnostic or prescriptive and the patient is encouraged to seek help from their own private physician.
NOTE: Copyright 2013 Network for Neuropathy Support, Inc. This article may be reprinted or published for educational purposes as long as the printing or publishing is not for profit and acknowledgement is granted the author.