All support groups

Chronic Inflammatory Demyelinating Poly Neuropathy ( CIDP)

Polyneuropathy is a neurological disorder that occurs when many nerves throughout the body malfunction simultaneously.

Help spread the support to more people in need -- Please tell a friend or two. Thanks!


What's New Today

Sfinnel said...

4 months ago

My daughter is 16 months old and was just diagnosed with polyneuropathy through an EMG. Her neurologist said its genetic & had referred us to a genetic specialist to determine the cause & prognosis. Has anyone been diagnosed this young? I just don't know what to expect and cannot find much information on this diagnosis.

Wantinganswers said...

6 months ago

Hi i got told i got CIPD from EMG n high oritein levels on spinal Tap im on gabapentin 300 mg twice a day just started n they want to start IVIG treatments Fri they contacted insurance company im Getting second opinion Penn in a week started with numbness now pain in hands n feet now pain has spread get sharp pains everywhere here n there but feet hands legs arms r the worse afraid to start treatments if i dont have this

thomasfj2 said...

3 months ago

3 months ago

Pasteltulips said...

8 months ago

With my shoes on I can walk but I have weakness on my right side, when I have no shoes and try to walk, my legs shake and tremble and I almost fall, I don't have flat feet, I have a big arch, I am 38 female, I have pain in my feet and legs alot, my right hip often hurts so bad I have trouble driving. No doctor knows what this is, can anyone assist me in the right direction or to what is causing this. I do get tingling feelings in my calfs and bottom of feet. When I walk with shoes I shuffle my feet when ever I can. Any help? I posted here because when I do a search this keeps popping up as thearly possible reason why. If anyone has any hindsight into what this could be or could share their own opinion it would be helpful. The only doctor I've seen for this is my family doctor and he just has no clue??

4 months ago

bcminimart said...

11 months ago

How many still work,or have you had to go on disability because of symptoms

Shireenonelove said...

about 1 month ago

about 1 month ago

about 1 year ago

My husband was diagnosed with CIDP almost 3 years ago. He gets IVIG treatments once a month over the whole weekend. He is still in pain. He had 2 surgeries on his upper back the first in 2004 and the second this past year. Now we are told he has 2 collapsed discs in his lower back. He takes hydro and has since his first surgery. They have increased the hydro and now are trying to get him on zohydro which our insurance has not approved. It has been a month since it was prescribed and we can't get anyone to get the paperwork done. He seems to be in so much pain all the time I don't know how to help him. We have 5 children and I would like to know if this is a hereditary disease.

about 1 year ago

over 1 year ago

I have idiopathic peripheral neuropathy. Since brain surgery 3 years ago, I have suffered with pain, itching, hives, cramping, and mostly burning pain from my waist down. I have learned to adapt my life somewhat and take Lyrica and an antidepressant to help with the pain. My husband is very supportive, but my emotional pain has been extreme because of the fact that my mother and sisters don't believe that I have this. I've tried to help them understand, but they expect me to do things I can no longer do without extreme pain. Their lack of support and even mean behavior have hurt me a lot. Has anyone else experienced this and what did you do?

tiredofpain said...

over 1 year ago

I have not been diagnosed with this but it seems as the symptoms match.Along with emg/nerve conduction studies. Feeling confused .

over 1 year ago

kwowmom said...

over 1 year ago

I just received my diagnosis and I have to admit that I'm more than a little freaked out about it! I'm 35 and have 3 kids, aged 2, 6, and 8. I'm waiting on the insurance to approve my treatments so I haven't started anything yet. I've been living with symptoms for a little over 3 years now. How long do the IVIG infusions last? I mean, how long on the drip? I live with pain constantly and I'm hoping and praying for just a little relief from it. If I could get a good night's sleep without the burning and tingling and pain, I would probably wake up dancing! Which is something I haven't been able to do either.

over 1 year ago

kwowmom said...

over 1 year ago

Jeannette5 said...

about 2 years ago

My feet are numb and this has been going on for over a week Sometimes it feels like pins are being poked with needles.

blaman said...

over 2 years ago

I had a stroke 05/2012. Since then I have a burning sensation on the entire right side of my body. The pain is a 2 or 3 which i have learned to live with. 08/21/2014 the pain shot up to a 10+. The pain at night is unbearable - I want to cut my leg off !!! Anyway I will make a long story as short as possible - ok. I have been to the ER 4 times since 08/21/2014 2 times they did nothing. My bp was 180 over 126 on 21st visit - They sent home - WOW. Today 155 over 109 - still quite high. I saw a pain specialist last week. He put me on morphine ir 15 mg 3x a day. Also gabapentin 100 mgs 3x a day. This past Friday - over the phone he increased the morphine as well as the gabapentin. Help none of this helping. As I write this the pain in my right thigh is excruciating. Maybe an 8. It was a 10+. Please HELP ME more

over 2 years ago

over 2 years ago

Load More Conversations