Hello,
I’ve been through EIGHT neurologists, two were just for consultations when I was trying to move in the right direction, number 6, was my keeper who got me where I am today, “healing and recovering”. NUMBER 3 was the worst, when he checked my reflex’s after a five day series of IVIG’s and there were none, he told me I had no hope and he told me insurance wouldn’t pay for more IVIG’s that would do nothing.

WE DO HAVE HOPE.
NEVER NEVER NEVER NEVER
GIVE UP

Hello,
I wasn’t going to post this, but it still angers me and maybe it will be a good follow-up to Suzy’s venting.

I was going to go back to physical therapy again and I chose to go to the PT clinic at a rehab hospital near me because I thought they would have a good understanding of my syndrome (CIDP) and I knew a rehab hospital would be well equipted. I went for an evaluation. The therapist who I would be working with didn’t know what CIDP was. During the evaluation she asked me WHY I wanted physical therapy. My answers weren’t good enough for her and she kept badgering me “why did I want physical therapy”. She wanted an answer that my insurance would accept. She had me so upset, I could feel I was on the verge of tears. I have gone to PT clinics off and on for several years and that was the first time I was questioned like that. DOESN’T MY SYNDROME SPEAK FOR ITSELF ABOUT WHY I WANTED PT!! It’s documented that PT is a recommended treatment!

I DIDN”T LIKE THE THERAPIST, I WAS UNCOMFORTABLE WITH HER and I didn’t go.

Hello,
Now that other’s have “vented”, maybe I’m not being a crybaby by posting mine. I may feel better by putting it in words.

#1. I live with so much stress in my life that it consumes me and the stress has taken away a good nights sleep. I cannot control the stress because I live with it.

#2. My family is not there to help me, they do very little for me and I wouldn’t even be surprised in they didn’t know what syndrome I have.

#3. MY BIGGEST FRUSTRATION IS TRANSPORTATION. I cannot drive and because there are no family and friends who offer to take me out, I must depend on a Home Care Agency. My home care agency has gone up in price, so I only go out every three weeks now. I am housebound the rest of the days.