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I was diagnosed with CIDP three weeks back. Presidone was good for me, but I'm weaning off it now and down to one pill till next Wed. Not as good. Waiting on CIGNA to approve IVIG for over two weeks now.... I'll get treatment here in the Nashville TN area.

CIDP, a rare disease. My wife, breast cancer survivor of 20 years come Sept is in stage 4 and still fighting hard, taking chemo, and going to work every day. She had this to say. "You have a rare disease and you are a rare person." As we all are. She is terrific. Known her since she was 10, married to her for 40 years now. I'll turn 60 this Dec.

I'm amazed at how this disease effects everyone so differently. We have to drive our providers crazy. LOL. I started with drop foot on my left foot. Lost nearly 45 pounds now, mainly muscle and still go to the gym 2-3 days a week to work out my legs just to climb steps best as I can. I still go to work every day.

I was stunned last fall when I took the kids to the state fair in this area. I thought I could go / walk further than I could. That was really my first intro to knowing how handicapped I've become.

This week I had to take a 12V power supply, Astron 35M, in to get it repaired for my ham radio gear. It weighs only 35 pounds in a small case. I couldn't keep it in my arms and climb the stairs into the 1900's repair shop with 8" steps. Had to put it on the step, take a step up, move it, till I got to the top. I suffer from balance problems pretty bad. Got to the top, picked it up and went on into the shop. LOL, it was funny to me how feeble I'm become.

I love bird watching an have two bird feeder areas in the backyard. Now I know, a 40lb bag of black oil bird seed is going to kick my butt trying to get in the car and take home.

I'm an optimist. It is what it is. I will get better depending on modern medicine, my body, and God's will.

The only disappointment I've had lately happened last weekend. We had the three grandkids with us , ages 3,4, and 7. The 4 year old boy, Sean (other two are terrific girls!) wanted me to play chase or tag when we took him to the playground. I can walk slowly with a cane. My wife can walk unaided. Neither of us could play with him the way he wanted. 2 years ago I would have run him (or me) till one of us was exhausted. Oh well, life goes on. Life is good.

Anyway-Hugs and love to all. Let's enjoy life, friends, and family as we can. The most important thing is happiness.

Hugs

Joe

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Hi Joe!

Welcome and a big hello to your very courageous wife! Guess we all have our demons. Fought with POMCO to get my approval for IVIG..........according to them it is an experimental treatment. But it finally went through and have finished my second round last week. The IVIG brings its own challenges......mine is an itchy rash.

Good luck with your IVIG!

Stay strong.......Jen

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Welcome to the forum, Joe.

I can relate to your stories of realizing just how weak you really were. It is so hard to believe this is actually happening so quickly, that you don't accept it until you try to do something that used to be routine, and find you simply can't do it.

Prednisone didn't do much for me, but IVIG worked like gangbusters. In just days I was dramatically better. As far as I know, it is now considered standard treatment for CIDP. But, it is clear why your insurance company is fighting it, because it is hideously expensive. Keep fighting, and get your doctor to keep fighting.

Good luck!

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Joe

I also can relate to your story. You have several nice thing things going for you.... your wife, a great attitude, a great family (even though the grand kids are to young to understand right now) behind you. Keep your positive attitude it helps. I have been taking IVIG for 4 months now and I see some small improvements. I understand what I can do and can't do anymore. I am working to get back out there to play golf again. I know that I can do and I know that you can achieve what you personnally put your mind to it. There is a great support group here also. Some really terrific understanding people.

MACK

Uncle Bill said:

Welcome to the forum, Joe.

I can relate to your stories of realizing just how weak you really were. It is so hard to believe this is actually happening so quickly, that you don't accept it until you try to do something that used to be routine, and find you simply can't do it.

Prednisone didn't do much for me, but IVIG worked like gangbusters. In just days I was dramatically better. As far as I know, it is now considered standard treatment for CIDP. But, it is clear why your insurance company is fighting it, because it is hideously expensive. Keep fighting, and get your doctor to keep fighting.

Good luck!

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Reading your post already makes feel like thinking positive is the best way to deal with the day to day! You and your wife seem like kindred spirits of courage! My Mom ( 64 yrs. Young-diagnosed Oct.2011) also declined rapidly when weaning off prednisone. I has gotten much better (weakness) since all the IVIG. I hope progress and regaining strength comes soon for you and that you and your family find some healing!