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Living with Polyneuropathy CIDP, GBS, & CMT

Prayer, miracles, etc with CIDP

It’s been almost 4 years since my daughters nightmare began. From what I’ve read in so many of your posts here, you know the details.
I spent years working on prayer committees and practicing hands on healing, mostly at hospitals, with our Lutheran Church. I felt certain this was my ‘calling’. Sara and her sisters went with me often too. As I studied spiritual healing (mostly outside of the Lutheran Church) I was intrigued about the history and the mechanics of it. After 9-10 years I never saw or heard of anything close to a miracle. People were glad somebody was trying to help them for sure. (Believe me, as I expressed these observations around church I heard enough…to stop going to church altogether). So, whatever, this personal experience was never logically explained. I moved onto other more scientific research and studies. At 50 years old organized religion suddenly made no sense to me.
Then 6-7 years after determining I have no first hand knowledge of miracles and being somewhat skeptical of their existence at all Sara gets hit by CIDP. Lots of people, including me, are frantically praying. Church prayer groups are praying. Priests and preachers come by the ICU and they’re praying. Net result: yea, nothing one might hope for or assume. (A year later all these nice people have moved onto other people to pray, they assume Sara should have got better).
Here’s a question: are there any miracles reported about people with severe CIDP recovering? Like it never happened?
I met three people at the GBS/CIDP symposium in San Antonio 3 years ago that were cured by stem cell treatment. I spoke to them each at length and their family members and doctors. This is the real deal. They could be considered medical Miracles maybe. The down side is the cost and process in general for the average person.
I am always positive in my dialogs with Sara and hoping for the best for her. I don’t want to come across as anti religion or negative in general. Because I’m not.
Just wondering. You guys are the only people that might have answers.

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Steve, I wish I could write the words that would give you some hope. My husband is just over 2 years into his battle, and just keeps getting worse. Now his treatment has been denied so we are fighting an insurance battle in addition to hoping he doesn’t deteriorate significantly while we wait on it to hopefully be resolved. He has zero ability to use either hand - so not even able to clean himself or brush his own teeth without help. I do think he and your Sara are likely on the outside edge of just how bad it can get, but that doesn’t help you or me feel any better. I hope you have a decent neurologist, but if you don’t, keep looking - there are some good ones out there. I think the % of people who truly don’t get any better, much less mostly better, is so small that you just don’t hear much about it, considering that this nightmare is so rare to start with. All I can say is you and your family will be in my thoughts and prayers.

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Sorry to hear about your husband. It appears they are both in the worst of CIDP class. Very difficult for all.
One day at a time. One minute at a time. Appreciate the good whenever it appears.
Peace, Steve

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Steve, is your daughter in a place where there is a strong rehab center nearby? We have decided to seek rehab help from Shepherd Spinal Center in Atlanta. We are no longer hoping for treatment that will help, but need ways for him to be as independent as possible in daily life, and the Shepherd Center is top-notch in the south for helping people adjust to disabilities. They focus on rehab after injuries, but the end result is the same - are there tools or other ways to manage daily tasks that could enable our loved ones to be more independent. I’m not sure what might be in her area, but it is worth doing some digging to find out what could help her in any way.
I would love to hear from you as the months go by, and hear how things are progressing for her, with hopes for improvement in life in whatever way it comes.

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Steve, any changes with your daughter?

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We Thank you. Since I’m in Florida and Sara is in Phoenix I’m not part of the day to day like of her CIDP. I do talk to her every day.
I doesn’t help me to try to explain what’s going on in detail. Everybody with worse case CIDP knows. Some days bearable, some days horrible. Try to stay positive, smile as much as possible. Keep in mind during times of excruciating pain physically, mentally and emotionally it will get better.
Simply put; Sara needs prayer.

Hello Jacob. Thank you for your inquiry about Sara. She has no improvements. I could write a small book about her challenges. Lately the left eye basically doesn’t work. She can not adjust it or control the direction it goes. She has become weaker on one side. She was able to go to a Red Robin restaurant a few weeks ago. Very happy to be up to getting out. As she went to sit down she lost her leg strength and fell to the floor on her bottom. The humiliation of all the attention was worse than the pain in her bottom. She has been icing her bottom and resting on the couch at home since. The neurologist felt reducing the amount of IVIG she gets would be a good idea, using some logic that is just crazy to hear. And guess what?? Right; EVERYTHING is worse.
Sorry for the delay replying. I read the dialogues on this site only occasionally, not much. I’d like to read or hear about miracles, where people completely recover, resume normal lives. I don’t think this happens with worse case CIDP.
It is wonderful this forum is here. And other forums where people suffering rare disease can communicate with others in similar situations. Sara’s case is even more difficult because not many young people have CIDP. She have 2-3 other young ladies in the early 30’s she talks to with rare diseases. That’s helpful.
Wish I had uplifting news. You all deserve good positive reports.
Peace
Steve