New member

Powered by Translate

This is a preview of what your discussion will look like when you publish it. Go back to the discussion to publish or edit it.

Hi! I am a CIDP patient in remission (hopefully permanently). In the Spring of 2013, my legs started getting weak and then I started to fall down, which put me in the emergency ward. In the hospital they diagnosed me with CIDP, gave me IVIG, kept me for 5 days and then sent me to hospital rehab for 3 weeks. Both my legs and my arms were quite numb and tingly. After rehab, I was sent home with no follow-on CIDP meds and have had none since. Progress at home (walking, stair climbing, getting out of chairs, etc) was quite slow and depressing. Then after about 2-3 weeks, there was a rapid change and things started improving much faster (don't know the reason for this). My arms and hands got back to about 98% recovery but the legs were a little slower, but I can now walk 2 miles, climb 100 stairs and have removed all the "blocks" we used to raised the chairs so I could get out of them. I can pretty much do everything I did before the onset, only at a slower speed! Where I was really lucky was that during this entire time I had ZERO-NO pain, just tiredness in my legs. Looking at the discussions, I know I got off easy and have this little black cloud over my head called "possible relapse". I was hoping I could get some insight into that possibility but looking at the discussions it seems it is very patient specific, with no real guidelines. I go to the gym to strengthen my arms, shoulders to help the legs (which don't seem to improve too much with the gym work)-- anyway, I'll be happy if I can just stay where I am at now. Glad I found this site, a wealth of information!


Help Us Help Others

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

Like, Follow & Forward Us!

Follow Me on Pinterest

To Support, Click an Ad. Or Two.

Powered by

This community is part of the Ben's Friends network of patient communities. Learn more at

Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
Addison's Disease
Adrenoleukodystrophy (ALD)
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Eagle Syndrome
Ehlers-Danlos Syndrome
Glossopharyngeal Neuralgia(GPN)
Guillain-Barre Syndrome (GBS)
Lyme Disease
Multiple Myeloma
Nephrotic Syndrome
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Sjogren's Syndrome
Synovial Sarcoma
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases

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 for information on where to call.

Please Be Kind & Use Appropriate Language

Let's Keep it Nice & Clean
1. No Spam
2. No Personal attacks
3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
4. No Profanity, sexual references and illegal activity subject matter are not allowed in the Chat Room.
5. Specific doctor or hospital names mentioned in a negative context, for legal reasons.
6. Please take all political opinions to the appropriate place on the internet.
Specific doctor or hospital names in a positive context are welcome.
7. No sharing of members' posts to other sites without their express permission.
Thanks for your cooperation.
"To Know the Joy of Giving"


height="172" allowFullScreen="true" allowScriptAccess="always" scale="noscale" wmode="opaque" FlashVars="" type="application/x-shockwave-flash" pluginspage=""> </embed>">

Partners 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 PARTNERS, visit this link.


<param name="movie" value="" /> <param name="quality" value="high" /> <param name="bgcolor" value="#eb1717" /> <param name="flashvars" value="hideVisit=1&amp;;backgroundColor=0xeb1717&amp;textColor=0xf0ebf0" /> <param name="wmode" value="opaque"/> <param name="allowScriptAccess" value="always" /> <embed class="xj_badge_embed" src="" quality=high bgColor="#eb1717" width="100%" height="242" name="badgeSwf" type="application/x-shockwave-flash" pluginspage="" wmode="opaque" FlashVars="hideVisit=1&amp;;backgroundColor=0xeb1717&amp;textColor=0xf0ebf0" scale="noscale" allowScriptAccess="always"> </embed> </object>">


© 2014 Created by

Badges | Report an Issue | Terms of Service

Original text

Contribute a better translation