CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

Posted by sherlock @sherlock, Jan 6, 2019

I have been in treatment for CIDP going on 3 years. The treatment is IVIG infusions 2days a month. I also have small fiber neuropathy. I don't take any meds for this condition except CBD. CBD with lidocaine and some THC at bedtime. I can't take any of the first tier drugs like lyrica. Here's my question: Have any of you been treated for neuropathy with IVIG infusions?

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lynn66618 | @lynn66618 | Nov 20, 2023

In reply to @JustinMcClanahan "@sherlock, I see that you have met some of the members in the Anyone here dealing..." + (show)

Please include I also have been do w/CIDP

Becky, Volunteer Mentor | @becsbuddy | Nov 20, 2023

In reply to @lynn66618 "Please include I also have been do w/CIDP" + (show)

@lynn66618 There are several discussion groups about CIDP. I included this link to one of the discussions in which @johnbishop listed the groups with links.
https://connect.mayoclinic.org/comment/786104/
There is a lot of good information in the discussions. Be sure to ask any questions you want.
What can I help you with today?

lynn66618 | @lynn66618 | Nov 20, 2023

In reply to @becsbuddy "@lynn66618 There are several discussion groups about CIDP. I included this link to one of the..." + (show)

Thank you!!

stwalker717 | @stwalker717 | Dec 19, 2023

In reply to @JustinMcClanahan "@sherlock, I see that you have met some of the members in the Anyone here dealing..." + (show)

Please add me to your CIDP group discussion. I have been diagnoised with CIDP and small fiber Neuropathy and have received two 5 day IVIG treatments wit my third in January.. Looking for answers. Struggling to minimize damage at 69 yoa. Help

dwyermw | @dwyermw | Dec 20, 2023

In reply to @stwalker717 "Please add me to your CIDP group discussion. I have been diagnoised with CIDP and small..." + (show)

I also am 69 years old and welcome to our forum. This will be a great place to find useful information and encouragement in your journey. I was diagnosed in 2020. it is a complex illness with many variants. there is one universal truth that I find in many of our members. And that is a mental firmness of positive expectancy. You will find that there are certain routines in your life - both with homeopathic medication‘s and pharmacology along with scheduling your life around your most energetic times -that will allow you to perform at your best. Facebook has groups that provide excellent information. Be grateful for all things, take personal responsibility for your medical oversight; be receptive to ideas about diet and supplements. Best wishes to you for this part of your journey.

sb4ca | @sb4ca | Dec 20, 2023

I also have this though mine is slowly progressing and effects my motor nerves. My balance is only slightly bad. I also have a primary immune deficiency and started IVIG for that. My insurance turned down the infusion for the CIPD because my symptoms weren’t sudden enough. What aspects are the worse for you? I’m sorry you’re having to go through this

pfszakacs | @pfszakacs | Dec 21, 2023

In reply to @JustinMcClanahan "@sherlock, I see that you have met some of the members in the Anyone here dealing..." + (show)

I have also been diagnosed with CIDP. I believe that this is because there seems to be no apparent cause?
Anyone have any diet recommendations that would possibly help

lym | @lym | Dec 22, 2023

In reply to @lynn66618 "Thank you!!" + (show)

Please ad me to the discussion group. I have small fiber neuropathy and inflammation.

John, Volunteer Mentor | @johnbishop | Dec 22, 2023

In reply to @lym "Please ad me to the discussion group. I have small fiber neuropathy and inflammation." + (show)

Hi @lym, Welcome to Connect. You can receive an email notification for all new posts to this discussion by scrolling to the top and clicking on the small bell icon at the bottom right of the discussion description. Then select to receive email notifications at the top and click save.

Have you found any treatments that help with your symptoms?

minfromtexas | @minfromtexas | Dec 23, 2023

In reply to @pfszakacs "I have also been diagnosed with CIDP. I believe that this is because there seems to..." + (show)

The only thing that I can correlate is booze. Fewer and less intense spasms. Exercise has had a huge effect, especially anything that includes stretching of my legs. Currently I go to a class 5 days a week. Although my strength continues to ebb, the exercise has totally put a stop to my leg cramps.