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Uncle Bill

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.


Clinical Trials & Drugs

Started by CanadianAngel in General 3 hours ago. 0 Replies

Hi Everyone. I'm a relatively new member. I just wanted to share that in looking for information about CIDP, I ran across this site which lists new clinical trials by disease type.In Belgium, our health insurance doesn't cover IVIG unless you're…Continue

looking for a infusion center in Upstate NY

Started by laurie in General. Last reply by Ron 5 hours ago. 1 Reply

Every time I have an infusion, it takes a minimum of 4-5 attempts to get an IV line started. They have blamed it on my dehydration (even though I drink), sensitive skin, delicate veins etc. Others there have said they have had similar experience.…Continue

Highly Reccommend Dr. Ricardo Olivo - Southern California

Started by Bev Prine in Recommend a Doctor, Therapist, or Clinic (Positive Review Only) 8 hours ago. 0 Replies

Neuro-muscular Specialist Dr. Ricardo Olivo with Loma Linda University Medical Center at the Murrietta, California location is a compassionate, knowledgeable, caring doctor who is treating my husband. We highly recommend him. He does not rush the…Continue


Started by JanD in General. Last reply by Bev Prine 7 hours ago. 1 Reply

My sister asked me to check with the group to see if any of you know if IVIG will help her rheumatoid arthritis, since it's an autoimmune issue too.  Has anyone heard of using IVIG with RA?Thank you.JanContinue

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Latest Activity

CanadianAngel posted discussions
51 minutes ago

DazedandConfused replied to Tinapet's discussion IVIg Lapse Due To Insurance
"Hello, Tinapet and all the other members who have posted to help. I, too, am on Medicare A and B, and I also signed-up for Part D (prescriptions). if I may share my experience and make some recommendations, I'd be honored. So, the answer is…"
4 hours ago
Catt64 replied to Catt64's discussion Immuran
"Thank you all for sharing your thoughts and experience with me. My IVIG is Gamunex and I feel fortunate that I am being seen by a neurologist who specializes with CIDP. They have been very open and informative about their recommendations for…"
4 hours ago
Mashrub replied to Catt64's discussion Immuran
"I used Imuran for about a year. I didn't have any side effects but it also did not help me to stay stable. I also tried Cellcept for about 8 months. It did not keep me stable and gave me thigh bone pain. Nothing serious. I just didn't get…"
4 hours ago
Ron replied to Dori's discussion ivig not working/specialist in NYC
"Columbia and Presbyterian Hospitals are excellent. I live in NYC and see Jennifer Langsdorf. I recommend their entire department. However, Univ. of Miami has an excellent Neurology Dept. specializing in CIDP. Hoping you find treatment that works for…"
5 hours ago
Ron replied to laurie's discussion looking for a infusion center in Upstate NY
"I have deep, rolling veins. An experienced IV infusion nurse should be able to find a few veins that are accessible. Some nursing staff have had to try 3 times to find a vein. Hoping you find someone with experience. Putting a warn/hot moist pack on…"
5 hours ago
Bev Prine replied to JanD's discussion RA and IVIG
"Hi Jan, My husband has suffered from Rheumatoid Arthritis for 10 years, and then he was also diagnosed with CIDP in April 2015. He began steroids & IVIG and the Arthritis pain has been greatly reduced. Doctor seems to think it's because for…"
7 hours ago
laurie posted a discussion

looking for a infusion center in Upstate NY

Every time I have an infusion, it takes a minimum of 4-5 attempts to get an IV line started. They have blamed it on my dehydration (even though I drink), sensitive skin, delicate veins etc. Others there have said they have had similar experience.…See More
7 hours ago

This Week On Living With CIDP 

1 Immuran


Posted by Catt64 on October 6, 2015

2 B\P and infusion

B\P and infusion

Posted by thunderpaws on October 4, 2015

3 IVIG and rash

IVIG and rash

Posted by bbirder on June 16, 2014

4 IVIg Lapse Due To Insurance

IVIg Lapse Due To Insurance

Posted by Tinapet on October 6, 2015

5 Different Brands of Immunoglobulin

Different Brands of Immunoglobulin

Posted by brenda on October 5, 2015


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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.

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Blog Posts

Please keep up with line of treatment, Its been 14 years of CIPD and ready to try something new. Been going down hill last year or so.

Posted by 6900vet on September 26, 2015 at 9:33pm 0 Comments

Please keep up with line of treatment, Its been 14 years of CIPD and ready to try something new. Been going down hill last year or so.


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