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Blog Posts

Ivig in the uk & CSF 0.21

Posted by Cair on September 2, 2014 at 6:55am 0 Comments

Hi I've recently undergone a lumbar puncture and the only result I got was a CSF protein of 0.21 does anyone know what thus means?

Also I've just been told I'm having a three month trial of ivig, I'm 6/7years down the rd and this is the 1st… Continue

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.

Forum

Good news and the bad

Started by Robert Martin in General. Last reply by Bobby 23 minutes ago. 1 Reply

My neurologist says the pain I am feeling is from my nerves waking up. The pain is getting worse. Cramping deep aching , head aches are coming and staying. My arm is bruised and black and blue from blowouts in IVIG the nude just jokes she is leaving…Continue

What we need!

Started by estaban in General. Last reply by mdolich yesterday. 2 Replies

... an on-site neurologist to set us straight, Ask your neuro to chime in here, tell him or her to think of it as a public service.As a fiction writer in real life, I can shovel up the b.s. enough to make your head spin, but some of the suggested…Continue

Tags: misinformation

Telemedicine Patient Education

Started by Ben Munoz in General. Last reply by estaban yesterday. 1 Reply

Hi, everyone.  Dr. Joan Leafman from AT Still medical school in Arizona asks to help spread the word about some research she is conducting.  The survey is about Telemedicine Sessions for Patient Education.   If you are interested the link is here …Continue

PT 101

Started by estaban in General. Last reply by Robert Martin 11 hours ago. 1 Reply

Not 109,,,I have 22 physical therapy sessions scheduled. My therapist looks 17, but is 27 and is Maui beautiful with a smile of pure kindness. And, she likes to touch me... and man, did I HURT after the session on Wednesday! However, I know I'm on…Continue

Tags: physical, therapy, love, flowers, candies

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Latest Activity

Toni King Roberts replied to estaban's discussion THE SECOND COMING...
" "
1 hour ago
bteeter replied to estaban's discussion THE SECOND COMING...
"We live out here in Oklahoma, and finally got some more rain to knock down the dust.  We will not get back east until closer to the spring as we have spent so much time traveling with my disease.  First to KU medical in June and now being…"
2 hours ago
Toni King Roberts replied to estaban's discussion THE SECOND COMING...
"Dear bteeter....the unapproved drug is Alemtuzumab...some others involved in the study include Lexington, KY, Prauge, Poland, Cambridge, Clevland Clinic....I only took photo shots of part of the bulletin and I don't go back to Cullman until…"
3 hours ago

Moderator
mdolich liked Catherine H's blog post Axonal CIDP
3 hours ago

Moderator
mdolich left a comment for bruce2u
"Welcome to our family Brian. I'm sure you'll find a lot of great information here. We have a great group of members who are very supportive. Read all the past posts & comments, and ask questions. Start a new discussion to find the…"
3 hours ago

Moderator
mdolich commented on Catherine H's blog post Axonal CIDP
"I have to agree with Michael, it is a variant of CIDP, but still CIDP. Most neurologist have read about it, but have never had a patient with GBS or CIDP. It's hard to find a good neurologist that understands GBS/CIDP. I'm not…"
3 hours ago
bruce2u updated their profile
4 hours ago
Norbert N Steiner replied to estaban's discussion CIDP & DIABETES & PIRATES
"Hi Brian, It is called Charcot-Marie-Tooth disease and is an inherited disease where the lower part of the leg wastes away. This seems to be two diseases at once for you. I cannot say "feel better", but hope that you have only mild…"
5 hours ago

This Week On Living With CIDP 

1 Remission?

Remission?

Posted by Catherine H on August 27, 2014

2 Sural Nerve Biopsy results

Sural Nerve Biopsy results

Posted by Bob Button on August 26, 2014

3 THE SECOND COMING...

THE SECOND COMING...

Posted by estaban on August 25, 2014

4 CIDP & DIABETES & PIRATES

CIDP & DIABETES & PIRATES

Posted by estaban on July 6, 2014

5 Optic nerve atrophy

Optic nerve atrophy

Posted by Bob Button on August 26, 2014

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