Bewildered

I think you understand things completely, everyone is different in how and if they get better, all are affected differently and recover differently. I wouldn’t necessarily agree that some ivig is stronger than others, it is just different in how it is processed and how people react to the different cleansing agents. With the exception of s/d compared to liquid. But in general, it is a complicated,under studied disease. But we are learning, together!!
Dawn Kevies mom

John,

By the time we get to this forum most of us have experienced a lot of frustration. There is a very fair old wive’s tale that goes something like” … If it walks like a duck and quacks like a duck…….”

CIDP is pretty rare. Most of us have been through the ringer diagnosis wise. Not this, Not that, Doesn’t quack like this, can’t swim like that. As a result, we tend to get fed up with Dr’s and the process. But unfortunaely, it is the best we have.

I am NOT saying it is perfect, and I am NOT defending Dr’s who are Prima Donna’s (I have had experience there), or Know-it-all’s. But generally, when we keep after the Doc, and we learn all that we can, and when we become a better patient, then we will get better care.

In the beginning I knew a lot less than I know now. I asked my Doc a lot of questions. I read a lot about CIDP. I tried to learn. I didn’t tell him what to do, I tried to learn. I had a very good neuro. TRUST. I tried to not get frustrated at him. I did seek answers to questions.

CIDP is an autoimmune disease. The immune system attacks the myelin sheath which surrounds the nreve axon itself. Once damaged, the myelin sheath does not assist the transmission of the signal as it once did. the result is a poorly received signal, no signal, or a wrong signal. In the case of a muscle it could be a cramp, a twitch, or nothing. But it is all the immune system doing the damage.

What causes the immune system to go haywire? Your guess is like mine. But on order to recover, the immune system needs to get it’s act together and stop destroying the myelin. That is where several different layers of treatment come in.

I could go on and on, But I hope I have helped. It is not always so dark and unseen. The protocols are generally the same, but people differ.

The more you learn the more light you shed and the more you see.

Hang in there.

Dick S

All I can say is hang in there! Dick is right, it is a complicated disease, learn, learn, learn, as much as you can. We are all hoping
the best for you. Trust you Dr. and trust yourself, you know your
body best. It really helped me to start keeping a journal of dates,
what kind of test were performed and different things that would happen to my body. At first I thought I was turning into a hypocrondiac!! I felt like I had so many weird things happening.
Take care, keep in touch with the forum, these people know what
they are talking about!! God bless,
Ms. Judy