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Blog Posts

New clinical trial questions

Posted by rhondae2145 on January 29, 2015 at 8:42pm 0 Comments

I was wondering if anyone has checked into the clinical trials that some of the teaching hospitals offer. I seen where a Dr has done stem cell replacement & cured some autoimmune diseases and is currently recruiting to do the same for CIDP. I'm… Continue

ClinicalTrials.gov Studies

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Ben's Friends Fundraiser

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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.


Solumedrol and increased heart rate

Started by Peter in General. Last reply by Sunshine 15 hours ago. 1 Reply

Hi!Last week I was in hospital for a three day corticosteroid treatment.I experienced side effects in form of elevated heart rate, "beeing wound up (?)" sleplessness.My last dose was on friday (jan 23). I tried to go home no thursday but had to…Continue

Tags: heart, solumedrole, prednisone

Dry flaky skin on face, and flush face

Started by jobe in General on Wednesday. 0 Replies

Hi,I'm about 12 weeks into the initial CIDP symptoms and am 1-week post first-treatment. At some point in the last couple of months - I cannot remember if it was pre-or-post onset of initial CIDP symptoms - skin on my forehead and near my hairline…Continue

IVIG success

Started by jobe in General. Last reply by Jeanbell yesterday. 1 Reply

I'm doing well (so far) and wanted to share my story to-date as hope for anyone newer than me around here.My symptoms began probably 11-12 weeks ago with numbness and pins-and-needles in my hands and feet. I went to my primary care doctor about 7-10…Continue

Eye Nerve Problems

Started by rammy in General. Last reply by Brooke 5 hours ago. 8 Replies

Does anybody have Eye issues related to CIDP. My wife was diagnose with CIDP about a year ago, she is currently going to the Hospital for IVIG infusion three days every month.About Three month ago she start having double vision and problems with the…Continue

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Latest Activity

Doggymama replied to Lisa Jakee Hilton's discussion IVig Side Effects???
"I have CIDP and have been having IVig treatments for over three years. I always had crappy side effects so the dr added solu medrol 50mg prior to each infusion. However, the last three treatments I had chest tightness. The first two times, the nurse…"
2 hours ago
Doggymama replied to Tara Yazinski's discussion Please share what your CIDP symptoms feel like on a daily basis or certainly during a flare.....
"It's ddinately NOT just you and your descriptions are spot on!"
3 hours ago
Doggymama replied to busybee's discussion Any Results with Alpha Lipoic Acid?
"Hi Bee, I have been reading your posts because I am very interested in the ALA and if it helps. I know you wrote about the polio but one thing you said that screams classic CIDP to me is the feeling that you have rocks in your shoe. That is a…"
3 hours ago
Brooke replied to rammy's discussion Eye Nerve Problems
"I had no symptoms- just a very abnormal looking pupil. I had no success with IVIG and have not had it since April. "
5 hours ago
rhondae2145 posted a blog post

New clinical trial questions

I was wondering if anyone has checked into the clinical trials that some of the teaching hospitals offer. I seen where a Dr has done stem cell replacement & cured some autoimmune diseases and is currently recruiting to do the same for CIDP. I'm…See More
7 hours ago

dancermom and 6900vet are now friends
12 hours ago

dancermom left a comment for 6900vet
"You do that one-fingered typing rather well, vet. Fewer typos that I generally make using all ten, lol. I am glad to hear about the pups and hope you will send us all pictures. All the best to you!"
12 hours ago
6900vet left a comment for dancermom
"just adopted 2 shelter mixed breed pups. finally a reason to smile again.by the way their n ames are Fred and Ethel. Gives everyone a laff. i hve started the shakes this month.70mg of ivig in 2 weeks. does not seem to be working anyone.i will…"
12 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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