We receive hundreds of questions a year from neuropathy patients looking for more information. For many it is the first time they have been diagnosed. Following is one of our most common questions:
“For quite some time I have been suffering from strange symptoms from numbness in my feet and hands to strange pains when my skin is touched. How can this be possible to have both numbness and pain at the same time? Obviously something is wrong and all my doctor can tell me is that I have Idiopathic Neuropathy. Then to make matters worse he tells me that all my tests are normal and there is no cause for my symptoms. Thus I am told that I have Idiopathic Neuropathy, but what on earth does that mean and what do I do now?”
Unfortunately, this is the all too common diagnosis for many patients with peripheral neuropathy.
So RULE #1 for the patient is being an advocate for yourself and press the issue for a better diagnosis with your physician! Do not be a passive dependent patient, but be a partner and participant in your care with your doctor. To do this you must learn.
Be proactive both in your diagnosis and treatment. Continually research your symptoms and possible treatments and do not be afraid to question your doctor if you do not understand what to do.
I strongly recommend that patients never rest on a diagnosis of idiopathic neuropathy.
While we have come a long way in medicines understanding of neuropathy, forty years ago, when I first began suffering from my many symptoms, I had no where to turn for reliable information. Today that has changed as their are many sources of reliable information for neuropathy patients. In 2002 with information increasing on neuropathy, I began to change my approach and began to teach myself from the growing number of resources.
With the resources we have available to us today, such as the internet and the availability of a wide range of important books such as those found on the Neuropathy Support Network website, there is no excuse for any of us not to become more informed and to take responsibility for our diagnosis and treatment within the parameters of the Doctor|Patient partnership.
To learn more, I suggest the following two articles:
Idiopathic Neuropathy, What Do I Do Now
Thank you so very much for this website. I am unable to get help and my symptoms are getting worse. I have printed up some of your references. I really don’t know where to turn, having seen three doctors and being ill treated. My legs are now going numb as are my feet and ankles, as well as many other symptoms which have fluctuated.
My EMG’s were good. I was hoping to ask some questions if you have time.
A normal EMG is only one test that must be done to determine what is going on. We will send you a direct E mail providing the information you need. In addition if the doctor is not trained to administer these tests and to read them it is unlikely that they will provide a good diagnosis. You need to be working with a good neuromuscular neurologist.