CIDP (Chronic Inflammatory Demyelinating Polyneuropathy)

I have. I was getting infusions since 2014 until last year. They stopped working for me. I did not feel any different the day before and infusion or the day after, so the neurologist and I agreed to stop them. I also tried plasmapheresis which did nothing. I was paralyzed from head to toe twice with CIDP. I walk now (usisng a walker). I still have terrible neuropathy. I cannot take steroids because of severe osteoporosis.

@txamo Hello. I've read your posts and cant bring myself to hit that little ♡ and "like" them. Simply because liking what you are saying just doesn't feel right. So, here I am wanting to let you know that I have deep fealt empathy for you and your chronic pain diagnoses. I'm very happy you received beneficial help with IVig for 5 years and were able to overcome being paralyzed. That is a miracle. It's time to brainstorm again however. I have small fiber polyneuropathy and tried lidocaine infusions for 5 months. Although they did not work for me, they do for some. Has your neurologist ever mentioned this treatment?

Ketamine infusions have greatly benefited some people. I recall a lady here on Connect being in a wheelchair and then being able to get out and walk with the help of Ketamine infusion. When I inquired about Ketamine with my neurologist I was told he does not provide the treatment nor does his affiliated medical college hospital, and that I'd have to pay out of pocket typically. I truly wish you the best of luck with forward progress and pain relief. - Rachel

PS: Wondering if you have ever been treated at Mayo Clinic?

@txamo I wonder if you are taking bisphosphonates for your osteoporosis? Another Connect member, @sunnyflower has recently been struggling with whether to go back on them. They have caused her very significant pain in the past as a side effect but are supposed to make your bones less fragile I assume. I hope you do not have to take them.

One of the earlier posts in this discussion was interesting, where @sherlock says "I had 3 years of monthly treatments and didn't see improvement until after a year. I'm now in remission and just have pain associated with neuropathy. Diet is extremely important in controlling the symptoms. Eliminate sugar, dairy, gluten, red meat. Eat lots of greens, enjoy green smoothies, drink lots of water." Decided to pass this on in case you did not read it. Might be something to look into. But forgive me if this is something already obvious to you.

I truly hope something clicks for you. It's awful to live with such a condition. But you say you do have good people support in your life? If so, that is BIG. By the way, I have found that reading through historical posts from this forum can be very useful. Just put CIDP into the search window at the top of the page and start reading. Again, my very best to you. Hank

Hello Hank and @txamo, just to clarify, I have never been on bisphosphonates or any osteoporosis meds. My endocrinologists have been trying to get me to take them for years as I have already broken 3 pelvic and one rib bones spontaneously but I am to afraid of the side-effects, some of which can be serious. Warm regards, Sunnyflower

Hi Rachel and Hank, I have never been treated at the Mayo Clinic. I had an appointment the first year I was diagnosed and decided not to go. I then wanted to go a few years later and they would not give me an appointment. I was diagnosed and still see a Mayo trained neurologist. I am treated by a pain clinic for my chronic pain and have a nerve stimulator implant. It does not seem to be helping me much. I have not found anyone to give ketamine infusions. My pain doctor does not. I never heard of lidocaine infusions. Possibly my pain doc does them, but he has never mentioned them to me. I do get infusions for osteoporosis but I did not get one this year. It has helped with my bone density. My neuro has never mentioned a particular diet for CIDP. I have gained a lot of weight being so inactive. Hope this answers your questions.

Hank, I did get infusions of Reclast for four years. I am being treated at UTSW in Dallas. My last bone scan was much improved. I felt that I did not have a choice of not getting some sort of bisphosphonate because I had so many fractures.

Hello txamo. It is wonderful news that your last bone scan was much improved. I too feel I don't have a choice about taking the medication since I've already fractured 3 pelvic, one rib and other smaller bones, spontaneously due to my daily Prednisone. Did you suffer any side-effects from Reclast? May I ask how much of an improvement you have? My recent scan showed I'm 13% worse in my spine and 14% worse in my hip since my 2018 scan. They said that anything more than a 2% change is "significant". My T-Score was -3.5, and I think -3.7 for spine and hip I believe. So scary! Warmest wishes, Sunnyflower

@sunnyflower

It's always hard to get test results that aren't good, isn't it, Sunny? No matter how positive our thinking is, discouragement happens. I'm surely sorry that your bone scans revealed so much deterioration. Life is unpredictable in many ways. In the middle of uncertainty, having a firm foundation makes it possible to keep going, knowing that you have resources available through the indwelling Spirit of God, who gives us peace that's beyond our understanding. Blessings and peace be yours tonight, Sunny.

Jim

Thanks so much Jim. How kind of you to take the time. I'm getting ready for bed and am so blessed by your message. Yes, it is, without a doubt, the peace of God through Christ that surpasses all understanding that keeps me sane and joyful in the midst of the fires! I wish the very same for you! Peace for your soul and a very well-rested night! Sweet dreams my friend! Sunnyflower

@jimhd @sunnyflower
You two are both in my thoughts and prayers as I read these last two posts. Endless, unrelenting chronic pain which seems to have no end in sight, as soul crushing as it tries to be, can not crush the soul of one who has enough Faith in the lord. I am so very glad you both have that. I know beyond all doubt that whatever pain this life dishes out to you will be compensated for many times over in the next life. There is a reason for it all, but like you both have said (paraphrasing) it is beyond our ability to understand. May you both have peace and rest tonight. Hank