Living with Polyneuropathy CIDP, GBS, & CMT
Welcome to the new Bens Friends Polyneuropathy Site. 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. <br>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 Guillian-barre Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, and Charcot-Marie-Tooth which are predominantly motor peripheral neuropathies Although poly-neuropathy is common, it most often is the result of “something else” Guillian-barre Syndrome, Chronic Inflammatory Demyelinating Polyneuropathy, and Charcot-Marie-Tooth are known disease are either hereditary or autoimmune in nature and are “rare” This site is for peer to peer support for patients, family members, and caregivers of those diseases. Although the diseases are different (and we have dedicated sections for each) day to day living with them, symptoms and treatment are very similar and your experiences can help others even if their disease diagnoses is “different”.
Site Etiquette for Livingwithpolyneuropathy.org
FAQs on Privacy
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.
Who is Bens Friends
Support Bens Friends
New Member Check In
New members, start your experience here. Introduce yourself and share your story. Let us welcome you
We are new here
New to Group! Hello, and I'm eager for advice!
Diagnosed in 2014
Does anyone have cranial nerve pain or symptoms?
Hepatitis A vaccine
Does CIDP cause Fatigue or IVIG treatments
Newbies Guide to Polyneuropathy
Included in this category are resources written by members by members and notes from the moderators. We strongly encourage all members to explore these pages. This category will grow over time to include more and more information
IVIG and will it relieve CIDP symptoms
Allergic skin reaction to IVIG?
Pain in wrists CIDP or carpal tunnel
Welcome to Complementary Therapies! This is the place to discuss the array of complementary healing modalities that many of us rely on to help us live healthier lives. Whether you're looking to do more to promote your own health while undergoing medical treatment, or are waiting to get medical treatment and are looking to do what you can to feel better in the meantime, this is the place to post your questions and information. We will discuss everything from acupuncture and chiropractic to nourishing our bodies, minds, and spirits. This is the place to discuss healing modalities that can complement medical treatment
Accupuncture and CIDP
Black seed oil
Emotional Support new
Having a rough day? We're here to listen. Even though we have the diseases separated to deal with disease specific issues. PLEASE don't hesitate to offer a hand up to anyone needing it
What I wish people understood
Austin chronic pain support group
Prayers and Healing Energy Requests
A place to request prayers and healing energy for yourself or others, from our community of caring, supportive friends, for any issue(s) we deal with.
Recommend a Doctor
Want to recommend a doctor, therapist, or clinic? Positive review only, please.
Anyone know of a good NC Neurologist familiar with GBS?
Recommend a Doctor
This is our new chat. Just reply. If you want to go to a private chat simply click on the mebers avatar and start messaging. You can invite others to join you. For now we don't have a "who's online" box but hope to add that feature soon!
Events of interest to Polyneuropathy Patients. Just email to have the staff add your event.
GBS/CIDP Indianapolis IN Chapter Meeting
News from Bens Friends -
Moderator Hall of Fame - GBS
Ben's Friends Monthly Newsletter - November 2014 Issue
Discussion about this site, its organization, how it works, and how we can improve it.
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