You’re welcome, Trevor. I just sought out a Center of Excellence Dr after being put through the ringer myself. I certainly understand how frustrated you must me.

It is still questionable whether or not I have CIDP. I did have a bout with GBS last Summer. I did not progress very far and had a new onset of symptoms, so it could possibly be CIDP. I get a lot of fatigue, but it seems as though I have gotten stronger since starting IVIG. I get it about every 4 weeks. Somewhere in week 3 I run out of energy and strength more often. I also find that I get headaches, debilitating fatigue, and flu like symptoms a few days after. My infusion nurse mostly works with IVIG patients and has ( with me approval ) made some adjustments that have helped. First, we tried replacing the Tylenol with naproxen before infusion. That helped somewhat with the headaches. Then she infused the normal saline solution, for hydration, after the IVIG. My symptoms didn’t last as long. My dr increased the hydration from 250 ml to 500 ml. I just got done one dose tonight. My second is tomorrow, so I’ll know within a few days how well it worked. The step after that would be An infusion of Solumedrol , which is a steroid. I’m hoping this does the trick and that I don’t have to do the steroids. She said that this usually does the trick. Good luck. I hope you feel better.

Hi Jazz,
This time ,last year, I was in the hospital with GBS. I was suddenly in the role of helpless patient, instead of a nurse. I feel your pain. It takes a lot from you both mentally and physically. I had lost a ton of weight and gotten back into running before GBS, so my beautiful calf muscles were the first to go along with the foot drop. Although I am still far from being healed and still cannot walk per se, I can tolerate standing for a good 10 minutes. I still shuffle with the walker , can’t quite pick up the feet just yet. I can get a tiny bit of a lift once in a while. It may seem like an insignificant gain, but when you’re paralyzed from the legs down, it’s good. I do have some tone in my calf muscles. It’s been there for a good 6 months. Don’t worry. If I don’t do a lot and it’s there, yours will come too. I am always fatigued and yet I have trouble sleeping as well. I also have extreme body image issues too. I did very well on my diet and never felt deprived and now everyone is trying to feed me because they say I’m too thin. I’ve given in a few times and find myself eating when I’m not hungry. I am also on neurontin. I’m so afraid that I will gain weight and I can’t run anymore so how am I going to take it off? There’s no set scale or crystal ball that will give a recovery time. Everything you said sounds pretty normal to me. You’re not alone. Hope things get better for you.