Finding support for Polyneuropathy? Connect with people like you.

Living with Polyneuropathy is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. 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.

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.

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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.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

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Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

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