Has anyone really gotten over CIDP?

Scott22 @ Scott22

My post was the short version. I had an EMG test performed April 27, 2022, the symptoms were mild, I then received my first covid shot then 6 months later my booster shot. June 2023 I had my second EMG test and the symptoms were sever. The test results showed I had nerve damage both legs with reduced amplitude of the nerves. June I was unable to balance standing and had to hold on to anything so I wouldn’t fall. I now couldn’t feel my feet, stabbing pain both legs, pain in right groin. I was challenged with walking, standing from the seating position, had to use a shower chair because I couldn’t stand and worst of all I couldn’t sleep at night and was exhausted all the time. I was sleeping most of every day. My first consultation with the neurologist was set for 4.5 months later. I did not want to wait 4.5 months and if I could get my balance back then I could walk and get some freedom back. So after doing more online research I learned that stem cell therapy was new and was having good results with neuropathy in the feet. I found a neuropathy clinic that did stem cell therapy and started September 2023. Insurance did not cover any expense so I paid out of pocket. It was extremely expensive. The cost for 24 visits were north of $400 per visit. After the fourth visit I could balance and walk without assistance. The nerve damage is what it is and can never be reversed or repaired. January 15, 2024 I had my neuropathy bloodwork panel taken, and all the results were available April 9, 2024. It was determined by my neurologist that my condition was Idiopathic and the cause for the disease was unknown. The only high positive result was for very high inflammation. So I started to research on line for reducing inflammation. So do I hurt today, yes I do, legs, hips, arms, and shoulders. Do I hurt after exercising everyday for 60-90 minutes, yes I do. But I have figured out how to reduce the hurt by stretching for 40 minutes after. I got all the stretching exercises from online PT specialist. I finally figured out how to be more comfortable sleeping and I sleep better. So as to not make this an all night read, I reinvented myself. I do many things different now. I concentrated on what was I able to do, or as I explained, what in my body works and what doesn’t. I focused on protecting those thing that work. I just provided a lot of information that you probably didn’t need so that’s why I didn’t include it in my first post. I have read all the post in our support group and it scares me because I can feel all the pain everyone is experiencing. It’s scary because I don’t know what the future for me will be. When I was teaching leadership, one of my lessons was “when you feel like you’re out of control, make a plan and once you have a plan then you’re back in control by following you plan” I am following my plan. Thanks for reading this very long post. I will pray that all of you find some solutions soon. Scott22

FWIW, I’ve found that though you can’t repair the nerve damage, with regular PT (find one that knows MS if no experience with CIDP), the body can adapt IF you remain active and push almost daily excessive up to those fatigue crashes. I know it is hard-for me too. But even though I have lost almost all feeling in my legs and feet so balance is a big problem, I have not fallen in over a year, I’ve come close but I used to fall every couple of days for years. With my arms, with which I couldn’t comb my hair, I can now do a lot of work around house, do car repairs, and carry around the heavy’s cameras I use in my work. I get down a lot with what I can’t do at times, like my short work days and need for naps, but my wife reminds me of my progress often which is a gift.
My son, who is a marathon mt. Biker, devised this indoor cycling interval training for me adapted from his friend who does MS pt. It works.
“Indoor Cycling Intervals
Start with 4 x 30 seconds with 4 minutes in between. 30 seconds at a pretty hard pace. Do that twice a week. The rest of your rides can be an easier pace. As you get more comfortable bring the rest time down till you can do 30 seconds on 30 seconds rest for 6 intervals. As you get stronger you can very gradually push that fatigue boundary some. AND dad! You need more protein in your diet! It can be plant based but you are not getting enough.”
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When I was diagnosed in late 2020, I was hospitalized by my Neurologist so that the testing would not drag out over months but days.
Once CIDP was confirmed they blasted me daily with IVIG and steroids in two rounds to try and arrest the very rapidly progressing symptoms. It worked. The hope was though that my immune system would reboot and I would recover, but that never came to be. So the battle continues just to keep it at bay and work with the nerve damage I have. I give myself SCIG weekly 5 hours worth. That’s a hard pill to swallow, but it’s still
A life and a good one.
Right this minute I’m on a photography shoot, my line of work, and I’m in a bad place. I can’t feel my legs they are like sausages, and my arms are lifeless even though I infused yesterday. But I am just pushing through. I love what I do (going on 50 years now-I am 73). I know I can do this and even do it well. I’m fortunate to be vertical and here-still in the dance.

I’m 74 with CIDP reaching a severe level before diagnosis last August. You have an excellent attitude towards this difficult situation and photography seems like a great fit for a career even with these limitations. My IVIG is getting less effective and I am going on Rituximab soon. I’m hoping that will help more and keep me walking even minimally. Good luck with your treatment and your positive attitude is contagious 😀

Thanks. Best wishes with the Rituximab. Please keep us informed about your progress with it.

Forgot to mention that Dr S is sure that Rituxan will be covered by my insurance.
I did get a call this week from Serena in his office and she told me it would be covered in Arizona.
I don’t get it really, I was denied here in Florida, but approved in Arizona.
I will be getting them as soon as I can.
Maybe Dr. S and his staff fight harder for this drug, and my Florida neurologist didn’t.
That could be the case.

Harley, Dr S wants me to take Rituximab but my insurance denied it based on it’s not an FDA approved indication for CIDP. I was just hospitalized for 4 days with worsening CIDP and it’s so frustrating to have the insurance company refuse to approve the drug my neurologist wants for me. I am sick of having to fight so hard to get what I need to be able to walk and live decently! I barely have the energy to get through the day let alone fight with insurance company and beg for help to stay out of a wheelchair.

@slkanowitz
I am so sorry for your suffering and can empathize with your frustration when needing to fight for proper care and how the insurance companies make everything so difficult. If possible, see if your doctor can call and appeal with the insurance company to use the drug off label.

Not exactly the same but my doctors had to appeal 2 times after the initial first rejection to get me to move from IVIG to SCIG (Hizentra home/self infusions). They gave all kinds of reasons for the rejections but I’m pretty sure it was just really about the increased cost.