Welcome

Welcome! You're not alone.

Getting Started:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Join or Create a Group

Questions? 
Check the Help tab above.

Privacy

Since site content and usernames are google searchable, please protect your anonymity by creating a unique username.

To change your username, click here. 

Disclaimer

All of the material provided on this site is for informational purposes only and is not a substitute for professional medical advice or treatment.

Always seek the advice of your physician or qualified health provider with any questions regarding your health.

Do not disregard professional medical advice or delay seeking it because of something you read on this site.

Our Guidelines

Let's Keep it Nice & Clean
  1. Describe (share experiences), not Prescribe (suggest treatment for others).
  2. No spam.
  3. No personal attacks or defamatory posts.
  4. No offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos).
  5. No specific doctor or hospital name mentioned in a negative context, for legal reasons. Specific doctor or hospital names in a positive context are welcome.
  6. No sharing of members' posts to other sites without their express permission.
  7. No solicitations or promotions of goods or services. No fundraising without the permission of the moderators.
  8. No email addresses or phone numbers on the forum, for your security.
  9. Religious content must be restricted to the Prayer Group.
  10. No politics, please.

Thanks for your cooperation.

Community Moderators

Have a question, concern, or suggestion? Or would you like to volunteer?

Please send a private message to a moderator.

Mdolich
Michael
Uncle Bill
DazedandConfused

Gift Store

 

What is Chronic Inflammatory Demyelinating Polyneuropathy?

Chronic Inflammatory Demyelinating Polyneuropathy  (CIDP) is a rare neurological disorder that affects peripheral nerves. CIDP is also sometimes called chronic relapsing polyneuropathy, caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both sexes, CIDP is more common in young adults and in men. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre Syndrome, and it is considered the chronic counterpart of that acute disease.

Forum

Loading Dose IVIG

Started by BabyDoll9175 in General. Last reply by DazedandConfused 15 minutes ago. 3 Replies

Hi there its me again with another general question  :) so I started IVIG treatments two weeks ago on 6/24 and while reading the Prednisone discussion I realized that my loading does was very different then what everyone else has posted. Have I been…Continue

Intro & seeking advice on how to combat lethargy

Started by Kelly in General 16 hours ago. 0 Replies

Hey everyone! Newbie here. Diagnosed in Feb 2014 after six long months of being bed bound and unable to walk on my own. I am slowly trying to regain my strength and exercise as much as I can to try to get back any of the muscles I've atrophied…Continue

Prednisone or not??

Started by Paloma Zuniga in General. Last reply by Chinin 12 hours ago. 10 Replies

I'm about to tell to my neurologist to prescribe me prednisone for the numbness on my feet and hands!!! I've been having this since October 2014 ....I've been on iv Methylprednisolone 1000 once a week for 6 six weeks. Finished two weeks ago and the…Continue

Nutrition

Started by Ditte in General. Last reply by laurie 4 hours ago. 2 Replies

Hello. I am curious about Nutrition and alcohol intake. Does anybody have any experience on how alcohol effects the IVIG treatment. Or if it helps to eat specific diet. That could be less acid or food that beats inflammation.Best regards BirgitteContinue

Mobile App and E-Book Available for Download

 Get support and information while on the go. DOWNLOAD the Ben's Friends iPhone App now,

Be inspired by the helpful tips and amazing stories of patients with rare diseases. Get the e-book "We're in This Together: Stories & Tips from Patients with Rare Diseases" HERE.

Latest Activity


Moderator
DazedandConfused replied to BabyDoll9175's discussion Loading Dose IVIG
"You're too kind, Babydoll! As to whether it is "strange" that your loading dose is the same as my maintenance dose, I'd say "it depends". There is generally a 1:1 gram to kilogram body weight "usual" dose, and…"
15 minutes ago

Moderator
DazedandConfused replied to Roy's discussion Interpretation and Conclusion...Your Input Needed...
"As a bit of discussion guidance, (placing my "moderator's cap" on!), I need to remind everyone that the question asked by Roy is certainly ripe for speculation and "prescription" by the members.   Let's resist…"
1 hour ago
BabyDoll9175 replied to BabyDoll9175's discussion Loading Dose IVIG
"Thank you so much fof always providing such helpful information. So does it seem strange that this was my loading dose though and that's your normal maintenance dose? I'm a problem child because I am very petite height wise only 4'8…"
1 hour ago

Moderator
DazedandConfused replied to eaetaylor's discussion Urinary issues
"Man to man, have your PSA levels checked.  You might be experiencing prostate problems. Then again, though rare (again because guys usually don't get these), it could be a bladder or kidney infection, but then again it could be a kidney…"
2 hours ago

Moderator
DazedandConfused replied to BabyDoll9175's discussion Loading Dose IVIG
"Hi, Babydoll. It sure sounds as if you have been hit with all the "front line" medicines, now that your IVIg is up and running! From what you've said, it sounds as if you are receiving a "usual" dose of IVIg.  I do not…"
2 hours ago

Moderator
DazedandConfused left a comment for alljack
"Hello, Alljack, and welcome to our supportive CIDP community! We have a worldwide network of CIDP patients and their caregivers/support givers, and if you wish, feel free to browse through the current and past Discussion posts.  There is a…"
2 hours ago
Profile Iconalljack, Kelly and Paloma Zuniga joined Living With CIDP - Online Support Group
2 hours ago
laurie replied to Ditte's discussion Nutrition
"I try to stay away from sugar & limit eggs. I stay away from  dairy/cheese as it causes inflammation. As for alcohol - I find that it makes me feel lousy - even a little bit."
4 hours ago

This Week On Living With CIDP 

 
 
 

Help Us Help Others

Support Ben's Friends

Bens Friends

Are You in Crisis?

First take a deep breath, then call the National Suicide Prevention Hotline immediately.  1-800-273-TALK for members in the United States.

For international members, please visit http://www.suicide.org/international-suicide-hotlines.html for the right phone numbers in your region.

Newsletter

LivingWithCIDP is a peer-to-peer network

To get support, give support.

Blog Posts

CIDP and Osteo Arthritis

Posted by ninny1 on July 7, 2015 at 5:31am 1 Comment

Does anyone suffer from Osteo Arthritis as well as CIDP? I have had a lot of falls over the last ten years, I have been told this is what has caused…

Continue

Partners

BensFriends.org is proud to partner with a number of organizations to better support our members.


To learn more about our partners, please visit this link.

About

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service