CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Me also

I found a very good video on CIDP on YouTube. It’s in French subtitles in English.

Here's the link for the YouTube video

@johnbishop thanks for posting. I will try to do it myself. I typically use my phone or iPad when I’m on here.

*** Edit Update Nov 16, 2023 ***
FPN Webinar: CIDP: From Soup to Nuts, with Sami Khella, MD
Fri, Aug 18, 2023 12:00 PM - 1:00 PM CDT

Dr. Khella will discuss different ways a patient should manage the condition, from when a patient seeks diagnosis to possible treatment options. The program will also highlight how CIDP varies from other forms of neuropathies. There will be a Q & A with Dr. Khella following the presentation.

Dr. Khella has more than 20 years experience in diagnosing and treating patients with a variety of neurologic diseases, and is an attending neurologist at Penn Presbyterian Medical Center. He co-founded the Penn Amyloidosis Center, one of the largest multidisciplinary programs in the United States treating patients with hereditary and acquired amyloidosis. They are a group that is active in clinical trials and cutting-edge therapies for this group of diseases. His other interests includes treating patients with acquired inflammatory neuropathies, such as chronic inflammatory demyelinating polyneuropathy (CIDP), and myopathies such as polymyositis and dermatomyositis.

My latest Foundation for Peripheral Neuropathy newsletter email also had this survey opportunity for those with CIDP or Multifocal Motor Neuropathy.
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You can help researchers better understand Multifocal Motor Neuropathy (MMN): Survey Opportunity
FPN is excited to announce that our partners at Inspire are conducting a study to help researchers better understand the experiences of people living with MMN.
Learn more... https://www.inspire.com/health/cidp-mmn-tkquant/

Hi there, I have CIDP since 2009 it was in remission until 2015 when it flared up, had solu medrol iv for 5 dys and this relieved all symtoms until 2022 August when I experienced pain in my left upper legs initially going across to the right hand side. I have lost complete muscle tone in my left arm and have 60% in my right arm. I have been on 3 x solu medrol for 5 dys over a period of 4 months with no long term improvement. I am trying to motivate my medical aid to pay for the polygam which will also be over 5 dys. I am putting a lot of faith that this will give me a longer period without pain. I am very weak and have had a lot of side affects from the cortisone. At present I have not taken cortisone for 6 weeks. What I don't understand is why it has suddenly been so aggressive and progressing so fast......very scarey!!

Check your diet for any changes in food intake recently. Also, if possible, find a heated swimming pool where your doctor can prescribe some light water aerobics

I'm sorry for your severe relapse. Did you have any of the Covid vaccines? They are linked to immune dysfunction and autoimmune-mediated nerve damage. The neurological symptoms typically peak about 8 months after vaccination. I developed sensory and motor peripheral neuropathy with some demyelination. My outstanding peripheral neurologist agrees the vaccine was the likely cause. I am slowly improving.

Me too. I was recently diagnosed.