# Latest **URL:** https://forum.livingwithpolyneuropathy.org/latest.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… --- ## [Welcome to Discourse](https://forum.livingwithpolyneuropathy.org/t/welcome-to-discourse/8)
**Author:** [@system](https://forum.livingwithpolyneuropathy.org/u/system)\ **Replies:** 0\ **Last updated:** [May 6, 2016, 4:03pm UTC](https://forum.livingwithpolyneuropathy.org/t/welcome-to-discourse/8 "2016-05-06T16:03:25Z")
The first paragraph of this pinned topic will be visible as a welcome message to all new visitors on your homepage. It's important! Edit this into a brief description of your community: Who is it for? What can they … --- ## [Did this supplements helped anyone?](https://forum.livingwithpolyneuropathy.org/t/did-this-supplements-helped-anyone/5894)
**Author:** [@Ev1](https://forum.livingwithpolyneuropathy.org/u/Ev1)\ **Replies:** 0\ **Last updated:** [March 25, 2026, 7:21pm UTC](https://forum.livingwithpolyneuropathy.org/t/did-this-supplements-helped-anyone/5894 "2026-03-25T19:21:18Z")
Hello, I have toxic axonal sensory peripheral neuropathy (linezolid) since 2013 after chemotherapy and 3 last years I used gabapentin, but I wish to quit. Doctors said I need to change to duloxitine or pregabalin. but I … --- ## [Could Gabapentin cause osteopenia or osteoporosis?](https://forum.livingwithpolyneuropathy.org/t/could-gabapentin-cause-osteopenia-or-osteoporosis/5893)
**Author:** [@Ev1](https://forum.livingwithpolyneuropathy.org/u/Ev1)\ **Replies:** 0\ **Last updated:** [March 25, 2026, 7:05pm UTC](https://forum.livingwithpolyneuropathy.org/t/could-gabapentin-cause-osteopenia-or-osteoporosis/5893 "2026-03-25T19:05:30Z")
Hello to everyone, I have toxic axonal polyneuropathy after chemotherapy since 2013 and since 2025 ostheoarthritis (allmost all joints) + osteopenia (hips), I used gabapentin during 3 years and yesterday I read that it c… --- ## [Today is Giving Tuesday. Here Are Two Easy Ways to Help Our Community](https://forum.livingwithpolyneuropathy.org/t/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community/5887)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [December 2, 2025, 3:20am UTC](https://forum.livingwithpolyneuropathy.org/t/today-is-giving-tuesday-here-are-two-easy-ways-to-help-our-community/5887 "2025-12-02T03:20:58Z")
Hi everyone, Today is Giving Tuesday, a day when many people look for meaningful causes to support. If you would like to help our community today, here are two simple and meaningful options. 1) Share our campaign with … --- ## [Our Community Is Coming Together. Here Is How You Can Help](https://forum.livingwithpolyneuropathy.org/t/our-community-is-coming-together-here-is-how-you-can-help/5879)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [November 25, 2025, 5:47pm UTC](https://forum.livingwithpolyneuropathy.org/t/our-community-is-coming-together-here-is-how-you-can-help/5879 "2025-11-25T17:47:02Z")
Hi everyone, As we approach the end of the year, our entire Ben’s Friends network is launching our annual community support campaign. Each forum plays an important role, so we wanted to share a few simple ways you can h… --- ## [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, … --- ## [Antibody?](https://forum.livingwithpolyneuropathy.org/t/antibody/2369)
**Author:** [@cwilson1987](https://forum.livingwithpolyneuropathy.org/u/cwilson1987)\ **Replies:** 1\ **Last updated:** [August 5, 2025, 2:36pm UTC](https://forum.livingwithpolyneuropathy.org/t/antibody/2369 "2025-08-05T14:36:48Z")
Hi guys, Merry Christmas! Without getting into too much detail, I've been to many drs lately and was diagnosed with a connective tissue disease and POTS. They ran a blood test on me to make sure nothing else was going … --- ## [Last Chance to Support Ben’s Friends in 2024 - Every Donation Counts!](https://forum.livingwithpolyneuropathy.org/t/last-chance-to-support-ben-s-friends-in-2024-every-donation-counts/5848)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [December 30, 2024, 10:19pm UTC](https://forum.livingwithpolyneuropathy.org/t/last-chance-to-support-ben-s-friends-in-2024-every-donation-counts/5848 "2024-12-30T22:19:04Z")
As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing short of inspiring, and … --- ## [From Isolation to Connection: The Role of Community Support](https://forum.livingwithpolyneuropathy.org/t/from-isolation-to-connection-the-role-of-community-support/5844)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [December 19, 2024, 8:03pm UTC](https://forum.livingwithpolyneuropathy.org/t/from-isolation-to-connection-the-role-of-community-support/5844 "2024-12-19T20:03:53Z")
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video from Jaz, one of our com… --- ## [See How Ben's Friends Changes Lives + Double Your Impact](https://forum.livingwithpolyneuropathy.org/t/see-how-bens-friends-changes-lives-double-your-impact/5843)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [December 16, 2024, 8:43pm UTC](https://forum.livingwithpolyneuropathy.org/t/see-how-bens-friends-changes-lives-double-your-impact/5843 "2024-12-16T20:43:52Z")
Campaign Update: If you have already donated to the campaign, THANK YOU. We are well over $15,000 for the campaign and the Matching Gift Challenge is really heating up (over 20 donors have already had their donations ma… --- ## [Exciting Update: Double Your Impact for Rare Disease Support!](https://forum.livingwithpolyneuropathy.org/t/exciting-update-double-your-impact-for-rare-disease-support/5842)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [December 13, 2024, 12:28am UTC](https://forum.livingwithpolyneuropathy.org/t/exciting-update-double-your-impact-for-rare-disease-support/5842 "2024-12-13T00:28:32Z")
I hope this message finds you well. As we approach the end of the year, I wanted to share an exciting update on our “Friends Helping Friends” campaign and a special opportunity to double your impact. Campaign Progress: … --- ## [See How Our Community is Changing Lives](https://forum.livingwithpolyneuropathy.org/t/see-how-our-community-is-changing-lives/5839)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [November 24, 2024, 1:14am UTC](https://forum.livingwithpolyneuropathy.org/t/see-how-our-community-is-changing-lives/5839 "2024-11-24T01:14:20Z")
I hope this message finds you well. Today, I want to share a powerful story that illustrates how our Ben’s Friends community is making a real difference in people’s lives. This story highlights why your support, whether t… --- ## [Become a Champion for Our Rare Disease Community](https://forum.livingwithpolyneuropathy.org/t/become-a-champion-for-our-rare-disease-community/5837)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 1\ **Last updated:** [November 19, 2024, 4:19pm UTC](https://forum.livingwithpolyneuropathy.org/t/become-a-champion-for-our-rare-disease-community/5837 "2024-11-19T16:19:51Z")
Thank you for being an essential part of our Ben’s Friends community. Today, I want to invite you to take your support a step further by becoming a fundraiser for our “Friends Helping Friends” campaign. What does it mea… --- ## [Join Us in Strengthening Our Rare Disease Community](https://forum.livingwithpolyneuropathy.org/t/join-us-in-strengthening-our-rare-disease-community/5835)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [November 15, 2024, 7:41pm UTC](https://forum.livingwithpolyneuropathy.org/t/join-us-in-strengthening-our-rare-disease-community/5835 "2024-11-15T19:41:11Z")
I hope this message finds you well. As a valued member of our Ben’s Friends community, I’m reaching out to share an important initiative that directly impacts the support we provide to individuals like you who are affect… --- ## [An Opportunity to Strengthen Our Rare Disease Community](https://forum.livingwithpolyneuropathy.org/t/an-opportunity-to-strengthen-our-rare-disease-community/5834)
**Author:** [@Ben\_Munoz](https://forum.livingwithpolyneuropathy.org/u/Ben_Munoz)\ **Replies:** 0\ **Last updated:** [November 13, 2024, 6:39pm UTC](https://forum.livingwithpolyneuropathy.org/t/an-opportunity-to-strengthen-our-rare-disease-community/5834 "2024-11-13T18:39:55Z")
I hope this message finds you well. As a valued Ben’s Friends community member, I wanted to reach out about an important initiative. In the coming days, we’ll be launching a campaign that gives us all a chance to streng… --- ## [We Need Your Financial Support](https://forum.livingwithpolyneuropathy.org/t/we-need-your-financial-support/5823)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [July 14, 2024, 12:11am UTC](https://forum.livingwithpolyneuropathy.org/t/we-need-your-financial-support/5823 "2024-07-14T00:11:24Z")
Dear Polyneuropathy Community, From the beginning of Ben’s Friends Rare Disease Communities, we have desired to provide these sites free of charge to our patients and their families. However, it costs us several thousan… --- ## [Looking For Your Polyneuropathy Stories!](https://forum.livingwithpolyneuropathy.org/t/looking-for-your-polyneuropathy-stories/5816)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [January 11, 2024, 12:23am UTC](https://forum.livingwithpolyneuropathy.org/t/looking-for-your-polyneuropathy-stories/5816 "2024-01-11T00:23:04Z")
@trust\_level\_0 Dear Polyneuropathy Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living… --- ## [SCIG availability](https://forum.livingwithpolyneuropathy.org/t/scig-availability/5810)
**Author:** [@Jules1](https://forum.livingwithpolyneuropathy.org/u/Jules1)\ **Replies:** 0\ **Last updated:** [September 25, 2023, 12:04pm UTC](https://forum.livingwithpolyneuropathy.org/t/scig-availability/5810 "2023-09-25T12:04:44Z")
Hi. Is anyone in the UK on SCIG in the North Hampshire area? --- ## [Signs your sensory CIPD is gaining motor loss](https://forum.livingwithpolyneuropathy.org/t/signs-your-sensory-cipd-is-gaining-motor-loss/5798)
**Author:** [@GregoryGoat](https://forum.livingwithpolyneuropathy.org/u/GregoryGoat)\ **Replies:** 3\ **Last updated:** [September 23, 2023, 9:47pm UTC](https://forum.livingwithpolyneuropathy.org/t/signs-your-sensory-cipd-is-gaining-motor-loss/5798 "2023-09-23T21:47:04Z")
Hello, I have mainly sensory CIDP, MADSAM variant, but feel I may be starting with some motor loss in my legs. I have broad sensory loss, at some level, almost over my entire body. No luck from IVIg or subcutaneous Ig. … --- ## [Anyone taking Adderall and Medicine Question](https://forum.livingwithpolyneuropathy.org/t/anyone-taking-adderall-and-medicine-question/494)
**Author:** [@sblilbit](https://forum.livingwithpolyneuropathy.org/u/sblilbit)\ **Replies:** 4\ **Last updated:** [September 18, 2023, 7:55pm UTC](https://forum.livingwithpolyneuropathy.org/t/anyone-taking-adderall-and-medicine-question/494 "2023-09-18T19:55:41Z")
My physician started me on Adderall 20mg today to help fight the fatigue and depression that I suffer with daily. I also take Zolft100mg and morphine 120mg daily. Also I take Namenda and Topamax daily. I was hesitate to … --- ## [What caused CIDP in you?](https://forum.livingwithpolyneuropathy.org/t/what-caused-cidp-in-you/588)
**Author:** [@estaban](https://forum.livingwithpolyneuropathy.org/u/estaban)\ **Replies:** 149\ **Last updated:** [September 18, 2023, 6:40am UTC](https://forum.livingwithpolyneuropathy.org/t/what-caused-cidp-in-you/588 "2023-09-18T06:40:09Z")
Dose anyone have a definitive idea of what caused your CIDP? How long have you had CIDP? When was your first symptom? I'm thinking my first symptom was left foot tingling in 2002 that eventually became a debilitating fo… --- ## [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 … --- ## [Gut nerves demyelination](https://forum.livingwithpolyneuropathy.org/t/gut-nerves-demyelination/5762)
**Author:** [@Palmieri8](https://forum.livingwithpolyneuropathy.org/u/Palmieri8)\ **Replies:** 0\ **Last updated:** [April 1, 2023, 8:26pm UTC](https://forum.livingwithpolyneuropathy.org/t/gut-nerves-demyelination/5762 "2023-04-01T20:26:18Z")
Has any one experience on what to do in case demyelination of gut autonomous nerves give rise to intestinal blockage? --- ## [📢 Calling mothers of children with rare diseases of all ages](https://forum.livingwithpolyneuropathy.org/t/calling-mothers-of-children-with-rare-diseases-of-all-ages/5793)
**Author:** [@ModSupport](https://forum.livingwithpolyneuropathy.org/u/ModSupport)\ **Replies:** 0\ **Last updated:** [August 12, 2023, 6:13pm UTC](https://forum.livingwithpolyneuropathy.org/t/calling-mothers-of-children-with-rare-diseases-of-all-ages/5793 "2023-08-12T18:13:00Z")
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Please share the community with other families who are affected. 70% of ra… --- ## [7 Things to Look for When Choosing a Doctor](https://forum.livingwithpolyneuropathy.org/t/7-things-to-look-for-when-choosing-a-doctor/5776)
**Author:** [@BF\_Writer](https://forum.livingwithpolyneuropathy.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [May 4, 2023, 10:28am UTC](https://forum.livingwithpolyneuropathy.org/t/7-things-to-look-for-when-choosing-a-doctor/5776 "2023-05-04T10:28:21Z")
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know eve… --- ## [Major Medical Breakthrough For Autoimmune/CIDP](https://forum.livingwithpolyneuropathy.org/t/major-medical-breakthrough-for-autoimmune-cidp/4651)
**Author:** [@mark1010](https://forum.livingwithpolyneuropathy.org/u/mark1010)\ **Replies:** 4\ **Last updated:** [April 30, 2023, 12:05am UTC](https://forum.livingwithpolyneuropathy.org/t/major-medical-breakthrough-for-autoimmune-cidp/4651 "2023-04-30T00:05:39Z")
Australian researchers have identified the specific cells that cause autoimmune diseases and how those cells go rogue & attack tissues. --- ## [Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MD](https://forum.livingwithpolyneuropathy.org/t/spotlight-ben-s-friends-former-intern-dr-melissa-jones-md/5770)
**Author:** [@BF\_Writer](https://forum.livingwithpolyneuropathy.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [April 25, 2023, 1:28am UTC](https://forum.livingwithpolyneuropathy.org/t/spotlight-ben-s-friends-former-intern-dr-melissa-jones-md/5770 "2023-04-25T01:28:47Z")
Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they… --- ## [Autonomic dysfunction?](https://forum.livingwithpolyneuropathy.org/t/autonomic-dysfunction/493)
**Author:** [@clb75](https://forum.livingwithpolyneuropathy.org/u/clb75)\ **Replies:** 16\ **Last updated:** [June 15, 2015, 6:54pm UTC](https://forum.livingwithpolyneuropathy.org/t/autonomic-dysfunction/493 "2015-06-15T18:54:15Z")
I was just diagnosed with autonomic dysfunction along with migraines and vertigo. I know some other members on here also have autonomic problems too.could anyone tell me a little more about your experiences and connectio… --- ## [Ben’s Friends inks partnership with ClozTalk](https://forum.livingwithpolyneuropathy.org/t/ben-s-friends-inks-partnership-with-cloztalk/5757)
**Author:** [@BF\_Writer](https://forum.livingwithpolyneuropathy.org/u/BF_Writer)\ **Replies:** 0\ **Last updated:** [March 22, 2023, 2:24am UTC](https://forum.livingwithpolyneuropathy.org/t/ben-s-friends-inks-partnership-with-cloztalk/5757 "2023-03-22T02:24:27Z")
Sascha Gallardo – July 1, 2020 We’re excited to announce that Ben’s Friends has partnered with ClozTalk, a social impact company that helps charities raise people’s awareness of their mission. ClozTalk now designs app… [Next page](https://forum.livingwithpolyneuropathy.org/latest.md?page=1)