New to the world of CIDP

HI all,

I'm very new down this journey - a journey that was definitely not on my bucket list. First, a little background on me. I'm a 45 yr old male living in Southern California and have always been very athletic since childhood playing just about every sport out there. It continued in my adult life playing men's softball, gym, etc. My metabolism was always high so I could pretty much eat anything under the sun and stay a comfortable weight. Meaning, a healthy diet was not on my priority list.

About Oct 2015, while playing softball, I noticed that my legs were just not keeping up with what my brain was telling them to do. I would stumble down first base line and even fell flat on my face a few times. Not a proud moment in front of my team that consisted of a bunch of 20 somethings. I knew something was up but pretty much shook it off to, "maybe I'm just getting old". My wife started noticing that I was walking abnormally. Her exact words, "Babe, you walk like you've got something up your butt"! I'd dismiss the comment saying that my legs were just sore. Then came the balance issues and the tingling in my toes. This affected my golfing and I was none too pleased! After much coercion from my wife, I scheduled an appointment with my GP in Jan 2016. After one visit, I was referred to a neurologist. Two visits with her and I was diagnosed with CIDP. I've read a ton of horror stories from you all on the length of time it took to get diagnosed and get set up with proper treatment. That killed me and so sorry for those that had to endure that. Insurance was also brought up a bunch but mine has been solid so far. I'm with Kaiser. Again, I'm sorry to those who are in financial stress due to this and my prayers are with you.

As any crazy tech person would do, I immediately jumped online when I got home to try to understand what the heck this was. The more research I did, the more questions I had and the more lost I felt. As I looked back on the past 4 months, it was clear there was a definite issue and progressing at an alarming rate. Tingling moved throughout the foot and up my calves. Weakness was getting worse by the day. I could almost see my thighs and calf muscles welt away on a daily basis.

The treatment. My wife and I were scheduled to leave for a two week vacation to Mexico mid Feb. So the doc set me up with a "loader" dose of IVIG (set of 8) all within a one month timeframe with the last three being back to back to back right before we left. I was hoping for something miraculous to happen so I could actually enjoy myself, but it didn't. By the time we left, I was using a cane to help me get around. Fortunately, we were in the pool 90% of the time so all was not lost. Did these treatments help? I have no idea. I know everyone is different and that IVIG sometimes takes a while to kick in. For me, all I started getting were these atrocious shooting nerve pains in various parts of my foot for no apparent reason. I call them "zappers". These typically happened at night right before bed or in bed. I didn't receive any treatment for about a month and during that time, I'd have some bad days and some okay days. Obviously more bad then good. There were no rhyme or reasons as to the good or bad... and trust me, I tried to figure out the recipe.

And tried I did. I now understand how IVIG works, what my condition is and how it affects my body. This started me down a path of trying to understanding what I could be doing differently in my life that would compliment the benefits of what IVIG was trying to accomplish. It came down to two main things for me: alcohol and nutrition.

First, the alcohol. I was the classic functioning alcoholic. I needed it to do the simple things in life from sleeping to eating to just about anything. What started out as beers and occasional cocktails on the weekends, turned into beers and cocktails on the weekdays, then finally to straight vodka drinks (devil's poison IMO) all day long. I telecommute for work so it made it very accessible. I would eat maybe once a day and even then, it was only half portions because I felt full. After dwelling on this for some time, I thought, "If I'm going through hell, why give it a nice bed to lay on?" After my vacation, I ditched the bottle. I've tried quitting before but for some reason, this time was different. My body knew a change had to happen or else I wouldn't be able to walk my two amazing daughters down the isle. That's enough motivation in itself. I've been clean for a month. The best part is that there is zero craving. I feel a little better knowing that whatever treatments are ahead of me, it will be unobstructed with the path I was going down.

Second, nutrition. I was never a health nut by any means. Actually, I hated pretty much anything green aside from maybe a salad and a cucumber here and there. However, through my normal tedious research, I came across some very inspiring posts, blogs and videos on how, with a proper diet, diseases like ours can fall by the wayside. Or, at least, reduce or omit all the western medicine that is being put in our bodies. I thought, what the heck. I've already made one huge life changing step. Let's go for two! I dove head first down the fast lane of a plant-based diet (vegan). I've only cut out meat and dairy for a week now but I've seen a huge impact on my body as it relates to tension, energy, being "regular", etc. I'm blown away at how my body has reacted. If you want to dig deeper on this, here is a link to a gentleman who did this and is off ALL CIDP treatments: - Look for the one titled, "My remaining CIDP symptoms after 4 years"

He speaks of a Dr. who inspired him which is this next link. It's over an hour long but well worth it.

Nutrition doesn't do everything unless you get some exercise in. My family started going back to the gym recently so I'm doing a routine that will push me but not kill me. This one is definitely baby steps. If anything, it makes you feel better about yourself for actually doing something. The mind is a funny thing.

On Apr 4th, I was put on Prednisone (60mg/day) and Gabapentin (600mg/day). Even before I started the meds, I was able to walk pretty well unassisted for short distances. The meds do help though and I haven't really had side effects although it's probably too early to tell. Doc also put me on a 1/mo IVIG routine that will start Apr 28th.

If you got this far, thanks for reading my novel :) It was actually therapeutic to finally be able to write this down to get it off my chest and sorry you got the blunt of it! Thank you again for this site. I've learned so much from it.

All my best to you and family,


Hey Rob,

First, congratulations on finding the motivation to move away from alcohol. That is no easy task, and I applaud you!

Interesting you brought up the nutrition discussion, you may have seen this (brief) discussion about the Wahls protocol diet:

It sort of sounds similar to what you're doing (although I have a hunch you may have come across this already). You will have to keep us posted on your progress

Glad to have you here!


Hi Rob, been there done that, with the exception of the alcohol. I started with the IVIG 6 years ago and I know it works with the prednesone. I went from every three weeks to every five weeks, and now every four. I'm also on gabapentin 600mg. twice a day for pain from degenerative disic disease and scoliosis and when things get really bad I have my T4s.

Hang in there Rob, thanks for sharing your own story with us. I tried physical therapy but it had an opposite effect on me. It was using up all the available energy for the day with me. 4 weeks of it and I was wasted. Any form of steps, incline or decline is my enemy. Fatigue as most of you know is a major part of our lives.

Hi Rob,
My name is Jack. I live just north of you in Bakersfield. I am almost 62, and was diagnosed with CIDP in May of 2016. I was having the same symptoms as you, and finally started the months long process of finding out what was wrong. I took IVIG for about 4 years, and it got to the point to where the nurses were having difficulty getting an IV started. My doctor switched me to Hizentra in May of 2020, which is a sub Q form of IG. I was taking two treatments per week until I had two reactions. Waiting, as we speak, to hear from the Pharmacist and come up with a new plan.
I try to workout 4-5 times per week to keep up strength in my legs and upper body. My legs are what this disease is attacking the most, so doing leg exercises is a real chore sometimes.
I just wanted to encourage you to hang in there! You have found a great family to talk to here on this website. Blessings to you and yours!!! Jack