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Ben's Friends Monthly Newsletter - October 2014 Issue

Posted by Ben Munoz on October 25, 2014 at 9:31am 0 Comments

Just the Stats:

Communities: 38

Friends: 43,500+

Connecting to others in a similar circumstance is helpful to decrease depression, anxiety,…


ClinicalTrials.gov Studies


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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.



Started by Robert Martin in General. Last reply by Robert Martin 13 hours ago. 3 Replies

I have begun experienceing tremors. Pharmacist says it could be a reaction to the IVIG


Started by harpa2000 in General. Last reply by estaban 30 minutes ago. 4 Replies

As a recently diagnosed and extremely frustrated CIDP patient, I was very dismayed when I could not get my desired response several weeks ago about what recovery felt like (I posted on various websites for folks like us).  I greatly appreciated the…Continue

Constipation... s*&t doesn't happen!

Started by estaban in General. Last reply by mabes yesterday. 6 Replies

I am sixty-four years old, six-foot one, one-hundred and seventy-five pounds, BMI is 23.5. I exercise at a moderately vigorous level every day (sometime I must walk with a cane). Three mile walk, one hour swim; nearly everyday, hand & bench…Continue

Tags: oatmeal, caonstipation, diet


Started by Maggie in General. Last reply by john1953 7 hours ago. 13 Replies

I was diagnosed with CIDP after 3 neuro's and numerous tests that concluded with a nerve biopsy. It showed a severly demylated nerve.  My insurance company denied  IVIG because I never had a lumbar puncture.My current  Neuro. who diagnosed the CIDP…Continue

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Latest Activity

estaban replied to harpa2000's discussion Recovery
"Good luck on your recovery, Youth and early discovery, treatment and high quality medical professionals makes all the difference. Unfortunately, I had none of these things available to me, on an outer island (Maui), when my CIDP was diagnosed. IvIG…"
30 minutes ago
Gert replied to harpa2000's discussion Recovery
"Hi. I hope you recover 100%. It took me 10 yrs to recover plus minus 70%. I still can't run and my feet pain. I have lost the reflexes in my knees and elbows permanently. It all started with a very worst case of CIDP. I was treated with…"
1 hour ago
Loni Hart replied to harpa2000's discussion Recovery
"You are very lucky they caught it early~ recovery odds are greater!!  QUESTION: in 2013 did you go on any antibiotics or have any infections? Also: You may find this interesting (Related to auto immune and diabetes with food…"
1 hour ago
Mashrub replied to harpa2000's discussion Recovery
"I am happy to hear that you are seeing results from IVIG. Timing and dosage can be very important. However, I would like to say be very cautious. Some people do go into a long term and even permanent remission. I hope you are in that group. But,…"
2 hours ago
Quiltergranny liked harpa2000's discussion Recovery
3 hours ago
harpa2000's discussion was featured


As a recently diagnosed and extremely frustrated CIDP patient, I was very dismayed when I could not get my desired response several weeks ago about what recovery felt like (I posted on various websites for folks like us).  I greatly appreciated the…See More
4 hours ago
john1953 replied to Maggie's discussion IVIG DENIED
"Nope I am off ALL medication.Stopped taking prednisone on july 3rd of this year "
7 hours ago
Gert replied to Maggie's discussion IVIG DENIED
"Maggie, I'm quoting a letter from Dr Imran Kahn, I've asked him if I can use PREDNISONE for the chronic pain in my feet: For temporary time yes. Go to a gluten free diet eat mostly fruits vegetables, organic corn, brown rice , fish game…"
10 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!


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