# Welcome **URL:** https://forum.livingwithpolyneuropathy.org/c/welcome/37.md [Latest](https://forum.livingwithpolyneuropathy.org/latest.md) · [Categories](https://forum.livingwithpolyneuropathy.org/categories.md) --- ## [Welcome To Our New Discourse Site](https://forum.livingwithpolyneuropathy.org/t/welcome-to-our-new-discourse-site/2714)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 4\ **Last updated:** [September 8, 2016, 7:34pm UTC](https://forum.livingwithpolyneuropathy.org/t/welcome-to-our-new-discourse-site/2714 "2016-09-08T19:34:10Z")
Were you a member of our old CIDP, GBS, or CMT sites? Simply LOG IN with your old user name and click on "Forgot password". We will send you a link to claim your old profile. First time visitor? Please go to our Main P… --- ## [About the Welcome category](https://forum.livingwithpolyneuropathy.org/t/about-the-welcome-category/2553)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0
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, a… --- ## [Coming to terms with such a disease - CIDP](https://forum.livingwithpolyneuropathy.org/t/coming-to-terms-with-such-a-disease-cidp/843)
**Author:** [@Michael1](https://forum.livingwithpolyneuropathy.org/u/Michael1)\ **Replies:** 18\ **Last updated:** [August 12, 2025, 12:37pm UTC](https://forum.livingwithpolyneuropathy.org/t/coming-to-terms-with-such-a-disease-cidp/843 "2025-08-12T12:37:10Z")
Hi fellow CIDP's and supporters. Well it has taken over 14+ months for me to begin to accept that I have CIDP and Sarcoidisis (Both immune disorders). After many IVIG, drugs and MORE drugs, the fatigue, feeling so sick, … --- ## [Muscle pain in legs](https://forum.livingwithpolyneuropathy.org/t/muscle-pain-in-legs/5797)
**Author:** [@Jules1](https://forum.livingwithpolyneuropathy.org/u/Jules1)\ **Replies:** 5\ **Last updated:** [September 3, 2023, 8:24pm UTC](https://forum.livingwithpolyneuropathy.org/t/muscle-pain-in-legs/5797 "2023-09-03T20:24:55Z")
Hi. I was diagnosed in July with CIDP. When I went into hospital I was almost paralysed but IVIG worked really well and I walked out a week later. I’ve just had a second round and due for a third next week. I have quite … --- ## [Privacy Policy](https://forum.livingwithpolyneuropathy.org/t/privacy-policy/6)
**Author:** [@system](https://forum.livingwithpolyneuropathy.org/u/system)\ **Replies:** 0\ **Last updated:** [May 6, 2016, 4:03pm UTC](https://forum.livingwithpolyneuropathy.org/t/privacy-policy/6 "2016-05-06T16:03:25Z")
What information do we collect? We collect information from you when you register on our site and gather data when you participate in the forum by reading, writing, and evaluating the content shared here. You do not have… --- ## [Terms of Service](https://forum.livingwithpolyneuropathy.org/t/terms-of-service/4)
**Author:** [@system](https://forum.livingwithpolyneuropathy.org/u/system)\ **Replies:** 0\ **Last updated:** [May 6, 2016, 4:03pm UTC](https://forum.livingwithpolyneuropathy.org/t/terms-of-service/4 "2016-05-06T16:03:23Z")
The following terms and conditions govern all use of the Ben’s Friends website and all content, services and products available at or through the website, including, but not limited to, Ben’s Friends Forum Software, Ben’… --- ## [Community Guidelines](https://forum.livingwithpolyneuropathy.org/t/community-guidelines/5562)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 11, 2021, 7:43pm UTC](https://forum.livingwithpolyneuropathy.org/t/community-guidelines/5562 "2021-11-11T19:43:03Z")
This is a Civilized Place for Public Discussion Please treat this discussion forum with the same respect you would a public park. We, too, are a shared community resource — a place to share skills, knowledge and interest… --- ## [How is Ben’s Friends Different from Social Media and Other Support Sites?](https://forum.livingwithpolyneuropathy.org/t/how-is-ben-s-friends-different-from-social-media-and-other-support-sites/5561)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 11, 2021, 7:42pm UTC](https://forum.livingwithpolyneuropathy.org/t/how-is-ben-s-friends-different-from-social-media-and-other-support-sites/5561 "2021-11-11T19:42:24Z")
Many people wonder how a Ben’s Friends community is different from social media and other support sites. The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and in yo… --- ## [New to the world of CIDP](https://forum.livingwithpolyneuropathy.org/t/new-to-the-world-of-cidp/1094)
**Author:** [@RobF](https://forum.livingwithpolyneuropathy.org/u/RobF)\ **Replies:** 4\ **Last updated:** [January 4, 2021, 6:37pm UTC](https://forum.livingwithpolyneuropathy.org/t/new-to-the-world-of-cidp/1094 "2021-01-04T18:37:38Z")
HI all, I'm very new down this journey - a journey that was definitely not on my bucket list. First, a little background on me. I'm a 45 yr old male living in Southern California and have always been very athletic sinc… --- ## [New User Guide](https://forum.livingwithpolyneuropathy.org/t/new-user-guide/5334)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [September 29, 2020, 8:28am UTC](https://forum.livingwithpolyneuropathy.org/t/new-user-guide/5334 "2020-09-29T08:28:49Z")
Are you a new user? Don’t worry we will guide you through the following videos. How to Create An Account? Click the image to watch the video on creating a new account. --- ## [New to CIDP...and this forum](https://forum.livingwithpolyneuropathy.org/t/new-to-cidp-and-this-forum/904)
**Author:** [@skosbu](https://forum.livingwithpolyneuropathy.org/u/skosbu)\ **Replies:** 8\ **Last updated:** [September 6, 2020, 6:57pm UTC](https://forum.livingwithpolyneuropathy.org/t/new-to-cidp-and-this-forum/904 "2020-09-06T18:57:37Z")
First of all, thank you all for the well wishes. I was just diagnosed with CIDP about a month ago, so I am still coming to terms with it, but it helps to know that there are support groups out there to help. My journey t… --- ## [Newly diagnosed and have Q](https://forum.livingwithpolyneuropathy.org/t/newly-diagnosed-and-have-q/3506)
**Author:** [@Wolfgar](https://forum.livingwithpolyneuropathy.org/u/Wolfgar)\ **Replies:** 4\ **Last updated:** [March 28, 2020, 9:22am UTC](https://forum.livingwithpolyneuropathy.org/t/newly-diagnosed-and-have-q/3506 "2020-03-28T09:22:19Z")
I have recently been empirically diagnosed with CIDP. My journey started with a flu that would not go away. 4 weeks later I had pain in the deep muscle of my right leg and severe fatigue. This went on for about 2 months.… --- ## [C I D P and shingles](https://forum.livingwithpolyneuropathy.org/t/c-i-d-p-and-shingles/4563)
**Author:** [@howard\_w](https://forum.livingwithpolyneuropathy.org/u/howard_w)\ **Replies:** 0\ **Last updated:** [November 14, 2019, 2:30pm UTC](https://forum.livingwithpolyneuropathy.org/t/c-i-d-p-and-shingles/4563 "2019-11-14T14:30:07Z")
Hi, this is my first post. I live in Wales, near the north Wales coastal town of Llandudno. 2 years ago I was diagnosed with C I D P and have been having IVIG sessions every 6 months… I have found that swimming and Nor… --- ## [Creating a New Account](https://forum.livingwithpolyneuropathy.org/t/creating-a-new-account/3995)
**Author:** [@Bens\_Friends](https://forum.livingwithpolyneuropathy.org/u/Bens_Friends)\ **Replies:** 0\ **Last updated:** [May 17, 2019, 3:38pm UTC](https://forum.livingwithpolyneuropathy.org/t/creating-a-new-account/3995 "2019-05-17T15:38:31Z")
--- ## [The Good News and the Not So Good News](https://forum.livingwithpolyneuropathy.org/t/the-good-news-and-the-not-so-good-news/1231)
**Author:** [@Bobby](https://forum.livingwithpolyneuropathy.org/u/Bobby)\ **Replies:** 5\ **Last updated:** [March 10, 2019, 12:47am UTC](https://forum.livingwithpolyneuropathy.org/t/the-good-news-and-the-not-so-good-news/1231 "2019-03-10T00:47:20Z")
Hello Folks, I had a follow-up with my Neurologist last week and after 3 IVIG infusions I'm happy to report that the pain has decreased, a little. And the Dr reports that muscle strength, reflexes and sense of feeling ha… --- ## [Severe Leg cramps](https://forum.livingwithpolyneuropathy.org/t/severe-leg-cramps/1268)
**Author:** [@zeke](https://forum.livingwithpolyneuropathy.org/u/zeke)\ **Replies:** 2\ **Last updated:** [March 10, 2019, 12:41am UTC](https://forum.livingwithpolyneuropathy.org/t/severe-leg-cramps/1268 "2019-03-10T00:41:45Z")
I have suffered from leg cramps while on IVIG. One episode was so bad my wife took me to the ER. The cramps were causing my leg to contract as if in a seizure. The Physician treated me with Valium (muscle relaxer) and … --- ## [Frustrated Father](https://forum.livingwithpolyneuropathy.org/t/frustrated-father/3859)
**Author:** [@Steveflorida](https://forum.livingwithpolyneuropathy.org/u/Steveflorida)\ **Replies:** 20\ **Last updated:** [February 27, 2019, 6:14pm UTC](https://forum.livingwithpolyneuropathy.org/t/frustrated-father/3859 "2019-02-27T18:14:17Z")
Hi. First post here. Thanks for allowing me to join. Hope I don’t get asked to leave after this post. My daughter is 31. She has CIDP. It started as GBS 4 years ago. The nightmare of a lifetime begins. 3 months of being… --- ## [Anyone live in Oregon?](https://forum.livingwithpolyneuropathy.org/t/anyone-live-in-oregon/2514)
**Author:** [@Deborah\_Y](https://forum.livingwithpolyneuropathy.org/u/Deborah_Y)\ **Replies:** 1\ **Last updated:** [December 28, 2018, 7:53pm UTC](https://forum.livingwithpolyneuropathy.org/t/anyone-live-in-oregon/2514 "2018-12-28T19:53:39Z")
I'm moving to Bend Oregon within the next 6 months and will be looking for a new neurologist that might have some experience with GBS and was wondering if anyone was from the Oregon area that might could recommend someon… --- ## [Welcome Gerald from Ontario!](https://forum.livingwithpolyneuropathy.org/t/welcome-gerald-from-ontario/3690)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 1\ **Last updated:** [July 22, 2018, 7:23pm UTC](https://forum.livingwithpolyneuropathy.org/t/welcome-gerald-from-ontario/3690 "2018-07-22T19:23:33Z")
Hello, @geraldpotvin, and welcome to our community. Based on your bio, I can see that you have many experiences and it has not been an easy path thus far. I’m sorry to hear of your diagnosis and the difficult times you… --- ## [Greetings Alice, newly diagnosed with GBS and in need of support](https://forum.livingwithpolyneuropathy.org/t/greetings-alice-newly-diagnosed-with-gbs-and-in-need-of-support/3702)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 2\ **Last updated:** [July 20, 2018, 12:47am UTC](https://forum.livingwithpolyneuropathy.org/t/greetings-alice-newly-diagnosed-with-gbs-and-in-need-of-support/3702 "2018-07-20T00:47:16Z")
Hello, @ajett, and welcome to our community! We are glad you found us and I hope that you find our community and its members to be very warm, welcoming, and encouraging. After reading your bio, I see that you’ve had a … --- ## [Welcome Nurse Jackie, an RN and caretaker](https://forum.livingwithpolyneuropathy.org/t/welcome-nurse-jackie-an-rn-and-caretaker/3705)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 0\ **Last updated:** [July 18, 2018, 4:42pm UTC](https://forum.livingwithpolyneuropathy.org/t/welcome-nurse-jackie-an-rn-and-caretaker/3705 "2018-07-18T16:42:05Z")
Hello, @jjrn, and thank you for joining our community! It’s interesting to interact with caretakers and family members of patients. How did you hear about us, and were there any questions we can help answer for you? A… --- ## [Welcome the spiritual and optimistic Vanessa from PA!](https://forum.livingwithpolyneuropathy.org/t/welcome-the-spiritual-and-optimistic-vanessa-from-pa/3704)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 0\ **Last updated:** [July 18, 2018, 4:34pm UTC](https://forum.livingwithpolyneuropathy.org/t/welcome-the-spiritual-and-optimistic-vanessa-from-pa/3704 "2018-07-18T16:34:36Z")
Hi, @Vanna28, and welcome to our community! We are happy to have you and I hope you get the opportunity to browse the forums, meet our members, and read the stories from brave patients such as yourself. If you have any… --- ## [Hello Roger, struggling with pain from CIDP](https://forum.livingwithpolyneuropathy.org/t/hello-roger-struggling-with-pain-from-cidp/3701)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 0\ **Last updated:** [July 18, 2018, 4:00pm UTC](https://forum.livingwithpolyneuropathy.org/t/hello-roger-struggling-with-pain-from-cidp/3701 "2018-07-18T16:00:43Z")
@Roger, welcome to our community. Thank you for joining us and I trust you will find it warm and welcoming, but hopefully not as humid as Florida. :sunny: I recognize that you have struggled with CIDP since being diagn… --- ## [Hello Russ, recently diagnosed with CIDP and in good spirits](https://forum.livingwithpolyneuropathy.org/t/hello-russ-recently-diagnosed-with-cidp-and-in-good-spirits/3703)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 0\ **Last updated:** [July 18, 2018, 4:14pm UTC](https://forum.livingwithpolyneuropathy.org/t/hello-russ-recently-diagnosed-with-cidp-and-in-good-spirits/3703 "2018-07-18T16:14:51Z")
@Russ, thank you for joining our community! We are happy you’ve found us, and I trust that you will find our community to be warm and welcoming. I am glad to see that you’re in good spirits despite being diagnosed with… --- ## [Welcome Joe, a former railroad engineer and wood turner!](https://forum.livingwithpolyneuropathy.org/t/welcome-joe-a-former-railroad-engineer-and-wood-turner/3694)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 0\ **Last updated:** [July 16, 2018, 4:20pm UTC](https://forum.livingwithpolyneuropathy.org/t/welcome-joe-a-former-railroad-engineer-and-wood-turner/3694 "2018-07-16T16:20:46Z")
@JoeTN, thank you for joining our community. I am sorry to hear of your recent diagnosis, but based on your bio, it seems as though you’ve come a long way–much kudos to you for your resolve! We are happy to have such a… --- ## [Greetings NP Kelly!](https://forum.livingwithpolyneuropathy.org/t/greetings-np-kelly/3693)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 0\ **Last updated:** [July 16, 2018, 4:17pm UTC](https://forum.livingwithpolyneuropathy.org/t/greetings-np-kelly/3693 "2018-07-16T16:17:07Z")
@kellytimmer, thank you for joining our community. We are happy to have you and hope that you receive support, meet new friends, and find our community to be warm and welcoming. Being in healthcare yourself, I am sure … --- ## [Hello Julie from the Pacific North West!](https://forum.livingwithpolyneuropathy.org/t/hello-julie-from-the-pacific-north-west/3692)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 0\ **Last updated:** [July 16, 2018, 4:13pm UTC](https://forum.livingwithpolyneuropathy.org/t/hello-julie-from-the-pacific-north-west/3692 "2018-07-16T16:13:31Z")
@Jahowie, thank you for joining our community and sharing your story! Ben’s Friends is a collaborative, supportive community in which you will likely meet/interact with others with a similar story as yours. I am sorry … --- ## [Greetings Robyn, mother of two from California!](https://forum.livingwithpolyneuropathy.org/t/greetings-robyn-mother-of-two-from-california/3691)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 0\ **Last updated:** [July 16, 2018, 4:10pm UTC](https://forum.livingwithpolyneuropathy.org/t/greetings-robyn-mother-of-two-from-california/3691 "2018-07-16T16:10:51Z")
@Sparrow, welcome to our community. Thank you for joining and sharing your story with us. I am sorry to hear of your recent diagnosis but glad an effective treatment plan is underway. It is important to know that you … --- ## [Greetings Arnold with sudden onset CIDP](https://forum.livingwithpolyneuropathy.org/t/greetings-arnold-with-sudden-onset-cidp/3650)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 8\ **Last updated:** [July 1, 2018, 5:56pm UTC](https://forum.livingwithpolyneuropathy.org/t/greetings-arnold-with-sudden-onset-cidp/3650 "2018-07-01T17:56:08Z")
@Agordon785, welcome to our community. I am sorry to hear of your sudden onset of CIDP, and I hope it is under control as best as possible. While I know this may be a difficult time for you, know that you have a strong… --- ## [Hello Dot, supportive spouse of CIDP patient](https://forum.livingwithpolyneuropathy.org/t/hello-dot-supportive-spouse-of-cidp-patient/3652)
**Author:** [@Brandon\_BFIntern](https://forum.livingwithpolyneuropathy.org/u/Brandon_BFIntern)\ **Replies:** 1\ **Last updated:** [June 26, 2018, 12:55pm UTC](https://forum.livingwithpolyneuropathy.org/t/hello-dot-supportive-spouse-of-cidp-patient/3652 "2018-06-26T12:55:08Z")
@Dot, thank you for joining our community. We are glad you found us and hopefully are helpful to both you and your spouse, who was recently diagnosed with CIDP four months ago. I’m sure you have your hands full, but if… [Next page](https://forum.livingwithpolyneuropathy.org/c/welcome/37.md?page=1)