Peripheral Neuropathy e-Support
What's Inside
What is Peripheral Neuropathy?
How is Peripheral Neuropathy Treated?
Getting Help for Yourself Right Now
Dealing With the Pain of Peripheral Neuropathy
History of The South East Dallas Support Group
Our mission is to provide support and resources for those who have been diagnosed with Peripheral Neuropathy. The Peripheral Neuropathy e-Support works under the direction and guidance of The Neuropathy Association in New York City. The Neuropathy Association was created to help patients and their families deal with everyday life. Patients who learn to cope with pain and lack of mobility will gain a more realistic understanding of their condition and abilities
"Explaining Peripheral Neuropathy"
By: Mary Ann Donavan & Norman Latov, M.D.,Ph.D
The following are excerpts from this booklet:
Peripheral Neuropathy is the term used to
describe disorders resulting from injury to the peripheral nerves.
It can be caused by diseases that affect only the peripheral nerves
or by conditions that affect other parts of the body as well.
And symptoms almost always involve weakness, numbness or pain
- usually in the arms and legs. It will be helpful for you to
know a few basics of nerve biology to understand how neuropathy
gets started.....
The Peripheral Nervous System is one of the two main divisions
of the body's nervous system. (The other is the Central Nervous
System, which includes the brain and spinal cord.) "Peripheral"
means away from the center: and this system contains the nerves
that connect the Central Nervous System to the muscles, skin and
internal organs...
"Explaining Peripheral Neuropathy"
By: Mary Ann Donavan & Norman Latov, M.D.,Ph.D
Excerpts:
Some neuropathies come on suddenly, others gradually over many years. The symptoms depend on the types of nerves affected and their location, but the problem usually starts with weakness, numbness or pain. Here are some of the telltale signs people describe...
Usually caused by damage to the motor nerves,
leg symptoms include difficulty walking or running, "heaviness"
- it takes most of your strength to climb the stairs - and stumbling
or tiring easily. Muscle cramps may be common...
In the arms, difficulties with carrying a load of groceries, opening
jars, turning doorknobs, or combing your hair. Or you may be frustrated
to find you keep dropping things you thought you had a good grip
on...
The sensory nerves, when damaged, can cause many different symptoms. Early on, you may have spontaneous sensations, called paresthesias which include numbness, tingling, pins and needles, prickling, burning, cold, pinching, sharp, deep stabs, electric shocks, or buzzing. They are usually worse at night, often painful and severe. Unpleasant abnormal sensations brought on by touching or other stimuli are called dysesthesias Or instead, you may have anesthesia, a lessening or absence of sensation, which can cause you to burn or cut yourself and not know it..
When you have this symptom, you're probably not sure just where your feet are and may thus be uncoordinated and unsteady when you walk. Or you may realize that the way you walk has changed, but not be sure exactly how or why. Chances are you have widened your gait in an unconscious effort to keep your balance, or that you tend to drag your feet..
This is what doctors call the odd feeling you may have that you're wearing stockings or gloves or slippers when, in fact, your hands and feet are completely bare...
Damage to the autonomic nerves can cause dizziness when standing up, constipation, diarrhea, sexual dysfunction, and thinning of the skin, with easy bruisability and poor healing...
"Explaining Peripheral Neuropathy"
By: Mary Ann Donavan & Norman Latov, M.D.,Ph.D
The goals of treatment are twofold:
(1)To eliminate the cause of the disease and (2) to relieve its symptoms.
Treatment of the underlying condition depends on the cause. For example, vitamin deficiency can be corrected by the oral supplementation or injection of the deficient vitamin. Infections are treated with antibiotics or anti-viral agents. Autoimmune diseases are frequently treated by plasmaphoresis or immuno-suppression, using corticosteroid, intravenous gammaglobulins, or chemotherapy. In paraneoplastic neuropathies, treatment is directed at eliminating the underlying tumor. Toxic or drug-induced neuropathies are treated by removing the offending agent. In diabetes, close control of the hyperglycemia helps slow the development of neuropathy....
The major symptoms of neuropathy are pain and weakness. Pain can be alleviated with medications. Physical therapy and prosthetic devices, if necessary, can help maintain strength and improve walking...
Depending on the cause, therapy can slow, halt, or reverse the neuropathy. Once the damage is stopped, the nerves can then regenerate. The extent of recovery depends on how much damage was done. The less the damage, the better the recovery. Therefore, it is very important to diagnose the disease as early as possible and begin therapy...
"Explaining Peripheral Neuropathy"
By: Mary Ann Donavan & Norman Latov, M.D.,Ph.D
People who notice signs and symptoms that we have talked about here should not wait to see what develops. Much as you may wish it, chances are that if your neuropathy is chronic, it is not going to go away by itself. Instead, the longer you wait, the worse it is apt to get and the harder it will be to treat successfully....
Some neuropathies develop quickly, but most develop slowly over the years. So get busy now - even if you don't feel too badly. Nerve damage can be mild initially, but then if untreated, can spread and become much more serious, even irreversible. Find a good doctor. And don't be a passive patient if you have neuropathy in one form or another. Yet it has been called the silent disease because too few people, both patients and doctors, are aware of it.
If you're not a member of The Neuropathy Association, make a call to them and join. They have more information to send to you.
Together, we can beat this disease.
Above excerpts used with permission from The Neuropathy Association, Inc.The Neuropathy Association, Inc. 60 East 42 Street, Suite 942 New York, NY 10165 Tel: 212 692-0662 1-800-247-6968 Fax: 212692-0668
If you are looking for relief from Neuropathy pain, Dr. Gil I. Wolfe, an Associate Professor of Neurololgy, will be of interest to you. Dr. Wolfe has a practice specializing in peripheral Neuropathy. He also does research with Dr. Richard J. Barohn. Click here for his paper, "Painful Peripheral Neuropathy"
Above excerpts used with permission from Dr. Gil Wolfe.
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One of the major goals of The Peripheral Neuropathy e-Support is to help people find the peace that is possible amidst the storm of pain and upheaval. This section is meant to show how others have learned to find that peace that allows one to recognize what is in their control and what can be managed or accepted; to be able to have a reasonable quality of life. How can we learn the difference between what is within our realm of control and what must simply be accepted?
Understanding the realities of your condition, the progression of the symptoms and the immediate therapies and techniques to alleviate pain and maintain your own independence are the first steps in learning to cope. One must also understand, through ones own investment of time, what works and does not work on an individual basis. This website was created to give individuals the support and the resources to achieve a fulfilling life for themselves.
Coming to terms with the devastation of the affliction, and what you can do about it, can empower you to discover what is good in your life and what you DO have to live for. Some learn that their faith is both a support and a commitment to keep on living. Others may see that the relationships in their lives are important. Our ability to help others can be the most important thing we live for. This is a personal journey that everyone goes through in life. Our conditions often force us to review what is important to us to find peace in other ways. This can make life vividly interesting and lead to a deep sense of worth.
My goal is to share with you what I have learned that helps me cope with what can't be helped. Perhaps it will help some of you, or point you in a direction of finding ways that will help you in your struggle with PN. Let me give a bit of personal history: I will be brief and if you want to know more details, I'm just an e-mail click away. jonellwilder@sbcglobal.net
In 1975, I first noticed numbness at the tip of both big toes. It slowly inched up to the ankles. When buying a pair of shoes, I realized I couldn't tell whether they fit or not. I found I could not keep slipper type shoes on and did not know it until I was stumbling over them. My feet felt very strange, too strange to describe. I began to have sharp pain attacks in one foot or the other that could last 72 hours. ---- my primary doctor still did not know what was happening.
In 1984, a primary doctor sent me to four different Neurologists to diagnose the cause. All four diagnosed "Peripheral Neuropathy", but did not offer any help of any kind, except one Neurologist told me it was very important to walk every day as an exercise or my feet would forget how to walk ---- I thought, "Yeah, right"---. He was right, sometimes I don't know there is anything there except something is burning and feeling awfully strange at the end of my legs.
By 1989, my fingers began having the same sensations. Neuropathy is now up to my thighs and past my elbows.
Now, let me tell you how I cope and work around the disability problems and PN type pain.
You can tell by the dates that my PN developed very slowly. That was a blessing, as it gave me time to adjust to the ways I needed to do things in order to keep being independent. (you can read some of my tips in another Website, www.winoverpn.com/PNTips.html (also listed under "Resources". I won't repeat any of that here)
With progressing "foot drop" and tripping, my Neurologist insisted that I wear Braces to keep me from falling. Doctors also wanted me to use a walker for balance. (I walked like a drunk) I found that using two canes worked better for me when I would be away from the house. Lots of movement and open spaces is a real problem for balance. I experienced some funny details during this time, people would try to help. But it only made balancing worse.
I knew PN destroyed muscle, so I asked the Neurologist for a prescription for Physical Therapy. That was another blessing. I regained some muscle so my 'foot drop' wasn't so bad. After the series, I continue this at least five times a week at home. Walking is also continued. I no longer need the braces.
The drugs that Neurologists tried out for PN pain did not even begin to touch the pain and the side affects of the drugs was mentally and physically devastating. I went "cold turkey" about drugs even tho' doctors keep wanting me to try another one to see if it might help. I don't want anymore of that, it sets me back too much.
I cope by staying as healthy as I possibly can with good nutritious food and exercise, so I can be involved with life. That gives me a good attitude. When I am mentally involved, I don't think about the pain. Somehow, the brain over-rides the awareness of pain. If upsetting things knock me off track, that's when I find help through the Nightsounds programs --- which I tape, so I can listen as needed during the day or night when the program is not being aired. It keeps me centered on my faith. It helps me to remember the short prayer that Alcoholics Anonymous adopted:
God grant me the serenity to accept the things I cannot change,
Courage to change the things I can and
Wisdom to know the difference.
By: Donald Scharoff, DDS
"I was diagnosed with CIDP 3 1/2 years ago. At the time I couldnt walk, stand, or perform many of the normal functional movements and had to use a walker. My good fortune was to have been placed in the care of Norman Latov who has orchestrated my treatment."--Entry from our Guestbook
Dr. Scharoff found help for CIDP. His story
will be encouraging for those diagnosed with CIDP and others as
well. The help he received by the treatments suggested by Dr.
Norman Latov, M.D. will also help some other causes for Peripheral
Neuropathy (PN).
He has been able to cope with other symptoms of PN and continue
his Dental Practice. Read his story here.
He invites readers to email him. drdonrs@netzero.net
The Peripheral Neuropathy Support Group was created in 1997 by Jo Nell Wilder. Mrs. Wilder has lived with Peripheral Neuropathy since1975. Due to the limited availability of information on Peripheral Neuropathy, Mrs. Wilder searched to understand more about what was happening to her feet and legs. She found national resources as well as research groups.
Through her contacts, Mrs. Wilder began to see a need for supporting and sharing information with others. A Support Group meeting was created to share what she had learned in her day to day struggles and in communications with Neurologists in the Dallas, Texas area. The e-Support Group was formed on 2/14/2000 so she could continue contact with folks with Peripheral Neuropathy (PN) by e-mail. She can be reached at jonellwilder@sbcglobal.net
Monthly meetings are currently discontinued due to personal limitations.
http://millercenter.uchicago.edu/
Jack Miller Center for Peripheral Neuropathy
at the University of Chicago
The Jack Miller Center for Peripheral Neuropathy focuses on three
areas: state-of-the-art medical treatment for patients with peripheral
neuropathy, education about the disease, and research to identify
the causes and cures of these disorders.
www.winoverpn.com/PNTips.html
Self help suggestions in "PN Tips"
www.medicinenet.com
Type "Peripheral Neuropathy" in the search bar to find
information on this very useful site.
www.immunet.org/immunet/atn.nsf/page/a-250-09
Numb Toes and Aching Soles, John A. Senneff. Medpress. Coping with Peripheral Neuropathy.
Nutrients for Neuropathy, John A. Senneff. Medpress. Call toll free, 1-888-633-9898, http://www.medpress.com
NightSounds - Nightsounds Radio program originated in Chicago as a local nightly radio broadcast of Moody Bible Institute's station, WMBI. The focus of the program was to reach those individuals who, by the Lord's divine providence, would be searching the radio dial for something that would help to relieve their stressful, troubled spirits. The program would feature suitable music for this night-time audience, along with the unscripted comments and Biblically based insights of host Bill Pearce. http://www.nightsoundsradio.org
Personal note: If you want to listen to this program, their Website lists the radio stations that carry this program in the USA and Canada. Foreign countries also receive it. I found it in 1989 and it has been a blessing to me ever since, in so many ways.
Monthly meetings of the Dallas Support Group are currently discontinued.
We extend our appreciation to the Neuropathy Association in New York City for their help in getting our Support Group organized, and to all the volunteers who helped with their expertise.
We regret to tell you that Jo Nell Wilder passed
away on December 16, 2006
Anyone wishing to communicate with other visitors of this website
may do so
using the Guestbook.
View
Guestbook
To see earlier entries to the Guestbook look
in Archive03, Archive02 or Archive01
WebMaster, Dwain Wilder dwain@bearmeadow.com
