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Living with Polyneuropathy CIDP, GBS, & CMT

Sorry just venting , not really a discussion


#1

I'm sorry , but I belong to quite a few CIDP groups an all I read about is all the IVIG treatments people are going through and their problems ( I have also had reactions to ivig ) and also the use of prednisone, I do not want to be caught up in the loop of "treatments " for years on end ! When are they going to figure this out and stop using good people like us as guinea pigs ?

I can no longer walk , am confined to a bed and a wheelchair, have painful neuropathy of the hand...s and feet , no use of my legs or right arm and hand , just went through a new set of MRI scans , new EMG testing , that left me quite bruised , I might add !

The only ones I see coming out on all this are the Dr's , hospitals, and big pharmaceutical companies, with all the money they are charging for all the
"treatments " they provided to their guinea pigs.

I am not as bad off as some of you out there , I was diagnosed only three years ago , I keep telling everybody that something was wrong ,NO ONE WOULD LISTEN. I have been enrolled in physical therapy 5 times to no avail , I use to be hard working middle class , I have been forced to disability , food assistance programs, and the like.

I am just getting tired of it and I am pretty sure many of you are too


#2

It is difficult. I understand frustration. I came off ivig for three weeks and the progression started up imeadiately. I am now under Medicare so people only get paid what the medication cost not all the mark up.

At times I have thought I am not going to do this anymore we all have that choice… I think of how my not making the effort will effect my wife of 30 years and my sons and it is not my choice to add to there burden in life. I love the time to help them . To cook occasionally, help with the laundry or yard work when I can.

I guess the pharmaceutical companies could not make the ivig or the nurses could choose to do something else. And they probably would if there were not these people called patients. It’s not a cure it’s a treatment that reacts differently with each of us.

I hope you choose to have a happy day.


#3

Hang in there TPaws....take your treatments, do whatever you have to do. It really could get better. I was a concert pianist until 2 years ago. All of the years, dedication, all changed literall overnight. I've been through the depression, the despair. Know we have o express that, but also know that you have to keep the hope. Hpe is higher than optimism. Hope gives you life. You are not alone....in my thoughts. just hang in there. You'll have some better days


#4

Your damn right we are. The frustration felt is sometimes beyond what I think I can take. However, this is the best place to vent. Very few people can understand what it is like to deal with this. And here is one of the few place where you will find true empathy. I can feel your pain. We are in the same boat. Even though it's a bit leaky at times.

I just keep up the hope for the good days that may come.