Welcome to Living with Polyneuropathy Patient Support Community!
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
This is an online support group for patients, friends and families affected by Polyneuropathy.
Polyneuropathy is damage or disease affecting peripheral nerves) in roughly the same areas on both sides of the body, featuring weakness, numbness, pins and needles, and burning pain. It usually begins in the hands and feet and may progress to the arms and legs; and sometimes to other parts of the body where it may affect the autonomic nervous system.
It may be acute (appearing suddenly, progressing rapidly and resolving slowly) or chronic (emerging and developing gradually). A number of different disorders may cause polyneuropathy, including Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy(CIDP) and Charcot-Marie-Tooth (CMT) which are predominantly motor peripheral neuropathies. Although poly-neuropathy is common, it most often is the result of “something else”. Guillain-Barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Charcot-Marie-Tooth (CMT) are known disease are either hereditary or autoimmune in nature and are “rare”.
Guillain-Barré syndrome (GBS) is a rare neurological disorder in which your immune system mistakenly attacks part of the peripheral nervous system—the network of nerves located outside of the brain and spinal cord. GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving you unable to breathe independently. Fortunately, most people eventually recover from even the most severe cases of GBS. After recovery, some people will continue to have some degree of weakness.
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that involves progressive weakness and reduced senses in the arms and legs. It is caused by damage to the fat-based protective covering on nerves called the myelin sheath. Symptoms of CIDP are:
- Tingling or no feeling in fingers and toes
- Weakness of arms and legs
- Loss of deep tendon (muscle stretch) reflexes
- Fatigue or feeling tired
- Unusual feelings in the body
CIDP can happen at any age and in both genders but is more common in young adult men. CIDP is closely related to Guillain-Barré syndrome (in which the immune system mistakenly attacks the body) and is considered the long-term part of that disease.
Charcot-Marie-Tooth disease (CMT) is one of a group of disorders that cause damage to the peripheral nerves—the nerves that transmit information and signals from the brain and spinal cord to and from the rest of the body, as well as sensory information such as touch, back to the spinal cord and brain. CMT also can directly affect the nerves that control the muscles.
LivingWithPolyneuropathy.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. But LivingWithPolyneuropathy.org is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
We don’t want you to identify yourself or tell exactly where you live: it is important to us that you should be anonymous here. That encourages openness. (And that’s a major way that we’re different from social media and other disease support sites.) Nevertheless, visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. That’s why your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.
LivingWithPolyneuropathy.org is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community, especially if they are well-informed about the state of medicine and research.