Hello! Here is my CIDP story

Back in 2014 I first noticed I was having a hard time climbing stairs. Of course I ignored it thinking I had pulled something. Then one day i was walking into work and had to go from the parking lot to the sidewalk and as I stepped up my knees buckled and I almost fell. I knew then that something was really wrong with me.

I went to regular doctor and he told me he didn't see anything abnormal except for the fact that I'll need hip replacement at some time so I have that going for me :)

I knew there was something seriously wrong. I thought I might have MS as a aunt of mine had it. I went to a great neurologist who figured it out in two days. He had me do a EMG (which was oh so my fun) and told me after that it was the most interesting set of results he has seen in a year (that's what I really wanted to hear). He said I had CIDP and after the insurance company approved my treatment (I think it was 3 weeks) I got my 5 day treatment.

After the third day I thought I felt better going up and down the stairs and in a week I was just about back to normal. I now go every 6 weeks for my IVIG treatment and even though its not cheap its well worth it. I don't really have any pain except for some cramping. I feel so lucky to have caught it early and to have it treatable.

Well that's it in a nutshell. Thanks for reading.

You are very wise for having gone to a doctor early. I was beyond stupid and waited until I couldn't walk anymore. Now, I'm bed ridden, it has affected my breathing and I get 14 IVIG Infusions every month since my neurologist has turned me into a guinea pig.

Very much the same for me 8 years ago.I'm up to 86 IVIG treatments now,every 4 weeks and as recovered as I'm going to be.Getting the diagnosis was the most difficult part-it took a lot longer than you.

My initial EMG reading was 83% loss.Now it's more like 20%.

Good luck on your CIDP journey!

hi thats great that the neuroligist pick it up so soon. i was paralised and in a wheel chair when i finally reached the neuroligist. this is the most freakiest disease i ever encountered and my mission in life is to inform every one of this disease. the more they know the better. and it helps alot to talk to you guys on this group it gives me lots of confidence to share my ideas with my dr that can work.

Your story is somewhat similar to mine. I first noticed problems going up and down stairs. To his credit, my family doctor suspected something neurological immediately, and managed to get me into a neurologist at 8:00 am the next day. The neurologist ran an EMG, and immediately diagnosed GBS (very reasonably). He had me in the hospital getting a five-day loading dose of IVIG that afternoon.

On the third day in the hospital, he sent me to physical therapy, and one of the things they had me do was to walk up and down stairs. To my amazement, like you, I was already much better, and I thought I was cured.

The problems came when my symptoms returned a few weeks later, and the diagnosis was changed from GBS to CIDP. .At that time, it took a while to determine the best course of treatment, but we eventually settled on regular IVIG, which helped me tremendously.

I wish it were possible to get the medical profession to suspect things like GBS or CIDP more often when patients come in complaining of weakness or fatigue. I have heard or read of numerous cases of patients having a very hard time getting a proper diagnosis, and as a result, having treatment delayed. My neurologist thinks that CIDP is greatly under-diagnosed in this country, and I suspect he is right. I was one of the lucky ones.