2 years out from diagnosis
December 21, 2012 at 12:04 am
2 years ago my husband, Marshall was diagnosed with GBS and subsequently changed to CIDP. He went downhill until the end of May 2011. After seeing a neurologist at University of Washington Medical center and getting on weekly high dose IVIG, he started improving. Walked out of UW on crutches in August of that year.
Sunday December 2nd, we walked a half marathon together. He still wears AFO’s at times, but not all the time. It took us 4:12 minutes, but we did it. He did it!
And, he is skiing without the outrigger poles. Not skiing like he used to, but he is skiing.
I hope this give hope for anyone who is just starting down this awful road.
Love to all of you,
December 27, 2012 at 8:18 pm
that is great news Patty 🙂 how long did your husband do the weekly ivig infusions? what do you mean by high dose? was it a loading dose—-2 gm per kg? or higher? That is great that he is able to ski again too!!!! i really miss skiing and am hoping to be back at it one day too. it is always nice to hear success stories with this disease—-glad you posted 🙂
December 31, 2012 at 5:53 am
He did weekly from April 2011 until October 2011, then he was changed to every other week for another 6 months. Then every three weeks. Then every 4 weeks. Now at the first of the year we are going to every 5 weeks.
I think it is actually 1gm per kg. The first 5 ivig treatments were a much lower dose, a really small bottle. Not it takes about 4 hours and is quite large.
He has a pure motor version of CIDP and his neurologist has kept him away from steroids. He is doing great. Still some foot drop, but really doing good. I just still hold my breath everytime he has a headache or is really tired.
When we first started this journey, I needed to see success stories. So, I want to keep posting so others who are just starting can see there is life on the other side.
He came home today from the mountain just beaming. Evidently it was sunny up there and just an amazing beautiful day. Living in Washington, we need that. But, he said his skiing was actually pretty good today. This was his 4th or 5th time out this year. He is on ski patrol, so he lives and breathes skiing.
When we were leaving UW medical, he told his rehab doc that he was going to ski last year. She was mortified. But, what she didn’t realize is that sking to Marshall is like walking to most of us. So, when he got sick, all I wanted was for him to be able to ski again. 1 month before he got sick, we skied together for the first time in 10 years. I has a 70 mph rollover accident and had a long recovery. So, we had been through a long recovery and when we were told his would be a long recovery, we both looked at each other and said, been there, done that. We knew we could do it.
We are actually only 1 1/2 years into his recovery, so we have quite a bit of time for more improvement.
I hope you to will be able to get back on the boards again.
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