CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

@0iggy11 you said that you are going to the Mayo Clinic in August so i thought you might find this discussion helpful.

You want to be as organized as possible so you can present a clear case. It would be terrible if you forgot an important detail! You could even start keeping a health journal. Write down what happens and when.make a list of all the doctors you’ve seen, etc.
Will someone go with you to the appointment?

Yes I agree

My daughter is a physician at Cincinnati children’s and has helped me to “collect my thoughts “ to present

Has anybody's CIPD been associated influenza vaccination

I am sorry.... CIDP and what I had just previous to my illness was a high dose flu vaccine in 2019

Hello @mrsfitz, Welcome to Connect. While we wait for those members to share personal experience you might be interested in the following information I found on the topic.

"Other studies suggest only a rare association with influenza vaccine citing an incidence of 1 or 2 excess cases of GBS over expected per million ..." --- GBS|CIDP Foundation International Position on Flu Shots and Vaccinations: https://www.gbs-cidp.org/support/resources/flu-shots-and-vaccinations/

Do you mind sharing a little more about how and when you were diagnosed with CIPD?

I finished round two last week. As I understand it, some do experience some relief. I think, though, that a more realistic goal is to slow or stop the progress, which is gauged by NCS tests; comparing "post treatment results" to baseline

Hi Justin, please add me to the CIDP discussion group. I was diagnosed earlier this year. Thanks Tony

Hi Tony, I thought I would jump in for Justin in case he didn't see your post. There is a discussion that will help you with any Connect related tasks including how to subscribe and unsubscribe to a discussion or group.

[TIP] How to Use Connect: Step-by-step Instructions: https://connect.mayoclinic.org/discussion/tip-how-to-use-connect-step-by-step-instructions/

Is "CIPD" the same thing as small fiber neuropathy? Similar?

Neurologist #1 did an EMG/NCS test, told me I have SFSN and that nothing can be done. Neurologist #2 was much more proactive. She repeated the test, did extensive blood work, concluded I have CIDP for which no specific cause could be cited. As this is an autoimmune disease, 6 months of Ivig was prescribed; 3 consecutive/ 6 hour days each month for 6 months. I have completed 4 and will finish up in January. I will have an EMG/NCS test done upon completion in order to assess the results (compare them the "pre Ivig" results). To date, I can report no improvement in the sensations I experience. Based upon this, my Dr. does not expect to see improvement in my EMG/NCS scores. If this is the case, there are no further treatment recommendations. She is an excellent Neurologist. Fortunately, my symptoms are mild and they are progressing very slowly. While a steroid regimen could be of value, we both agree the side effects are not acceptable. We have discussed various meds she will prescribe to treat my symptoms and I will certainly continue to see her. If, indeed, she indicates no additional treatment options, I will keep plugging away. Fortunately, I live in an area with many hospitals, research-oriented facilities and excellent physicians. I have upgraded my Medicare coverage from an Advantage Plan to a Supplement, so, effective 1/1/22 there are many more options available to me. No sense quitting now.