Welcome

Welcome! You're not alone.

If your family has been affected by CIDP, consider Living With CIDP your second home.

NOW....GET STARTED:

1. Become a Member
2. Make Friends
3. Post to a Forum
4. Read or write a Blog
5. Join or Create a Group
6. Follow us on Twitter
7. Become a fan to our Facebook

Got some QUESTIONS? 
Check our FAQ PAGE.

Read More from our  First-Time-User Guide.

Concerned About Privacy

Since content and usernames are searchable on this site, you may protect your anonymity by creating a unique username.

To change username, click here. 

Need a Doctor or Specialist?

Disclaimer

All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

Blog Posts

Prednisone

Posted by Ding71 on March 24, 2015 at 1:12pm 0 Comments

Hi!  I was finally diagnosed with CIDP February 2014.  I was put on Prednisone 4 weeks ago and I hate it!  I have Type 2 Diabetes, high blood pressure, sleep apnea and I still have the weak legs, some days are worse than others of course.  So…

Continue

ClinicalTrials.gov Studies

Loading… Loading feed

Events

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. Symptoms range from weakness to paralysis, mild loss of feeling to total numbness, and no nerve pain to significant nerve pain.

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) disorder is also sometimes called chronic relapsing polyneuropathy, is 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 genders, CIDP is more common in young adults, and in men more so than women. 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

Time To See Results When On IVIG

Started by ben in Symptoms. Last reply by ben 21 hours ago. 2 Replies

Hi All: It is great to have such a blog! It is very interesting to read all of the inspiring stories and how hard we are all working to get through this horrible disease.I am currently on my 3rd treatment of IVIG and haven't seen as much improvement…Continue

Tags: IVIG

heart problems & CIDP

Started by laurie in Symptoms yesterday. 0 Replies

My heart glitters terribly and I was diagnosed with bigeminy. This seemed to crop up after a rather difficult side effects from IVIG. Has anyone had the same?Continue

Tags: heart

Getting Sick while on IVIG

Started by dac1223 in Symptoms. Last reply by dac1223 yesterday. 2 Replies

HelloI'm still a new-bee to this; so, hopefully this is not a ridiculous question.I understand that IVIG is thought to suppress an overactive immune response (attacking nerves). It seems that how this all happens isn't greatly understood. While IVIG…Continue

Agent Orange

Started by Yitzi in General. Last reply by Yitzi Mar 25. 3 Replies

Ok I admit it  this post is going to date me.  I was first told I had CIDP by a pain specialist about a year ago,  it was confirmed by an EMG and NCT.   I am now under the care of a Neurologist who has put me through countless blood tests to exclude…Continue

Tags: veteran, va, agent orange

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

WhymsicalOne posted a status
"Hi all.thankful to have found this group about CIDP. I have been reading posts & am encouraged by your courage strength & determination!"
5 hours ago
WhymsicalOne updated their profile
5 hours ago

Moderator
DazedandConfused left a comment for L_space
"Welcome, Russ, to our supportive CIDP community. There are many people here with deep understanding of what it means to be a CIDP patient and how to deal with the problems that can sometimes arise in our personal and professional lives. Just…"
7 hours ago
Profile IconL_space and Vertigirl joined Living With CIDP - Online Support Group
7 hours ago
adele replied to DazedandConfused's discussion CIDP, IVIG, and Skin Cracking?
"yes, I have this on my palms; I thought my psoriasis had come back...or possibly skin conditions with diabetes and just getting older and drier.  thanks! Adele"
19 hours ago
ben replied to ben's discussion Time To See Results When On IVIG
"My first 4 day treatment was at in Feb with Privigen which didn't go well as I developed hemolysis. My dosage is 0.4 g per ml so about 120g. Therefore, they decided to spread out the 120g over 4 weak period so I just completed technically the…"
21 hours ago

Moderator
DazedandConfused replied to ben's discussion Time To See Results When On IVIG
"Hi, Ben, and again...welcome! Your question is one that has many answers, and in the end run, the most common response (in peer reviewed research, general CIDP experience, etc..) is this:  "It depends"! While trying to be as…"
22 hours ago
ben posted a discussion

Time To See Results When On IVIG

Hi All: It is great to have such a blog! It is very interesting to read all of the inspiring stories and how hard we are all working to get through this horrible disease.I am currently on my 3rd treatment of IVIG and haven't seen as much improvement…See More
22 hours ago

Try search feature before posting a question

This is a place to try to get answers to questions, before posting a question try entering it in search box in upper right and press enter. See if past discussions can answer new questions, try it, thanks!

 
 
 

Help Us Help Others

Please Like us on Facebook and follow Bens Friends on Tumblr and Twitter and Pinterest

Like & Follow Us!

Follow Me on Pinterest

Give Us A Review

Bens Friends

To Support LivingWithCIDP.org, Click an Ad. Or Two.

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 information on where to call.

Please Be Kind & Use Appropriate Language

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, please.
  9. We welcome people of any faith and no faith, but we ask that you not evangelize or attempt to impose your belief system on other members.
  10. Check your politics at the door, please.

Thanks for your cooperation.

LivingWithCIDP is a peer-to-peer network

To get support, give support.

Photos

Loading…

Partners

BensFriends.org is proud to partner with a number of organizations to help our members in various areas, including legal, financial, research and medical. 

Know more about our PARTNERSvisit this link.

About

© 2015   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service