I had an onset during pregnancy and was told by my doctor that this was coincidental...yet online I've seen case reports and even excerpts from books saying CIDP can sometimes have an onset during pregnancy or get worse if you already have it. Just wondering what other people's experiences are or if anyone has any knowledge about this? I was just diagnosed and trying to make sense of it all! Thanks--
I haven't heard about this possibility. (And one I can dismiss!) I spent some time initially trying to figure out how it all got started with me too. I had some small symptoms nearly 10 years back where I couldn't walk on my heels or stand on my toes almost at all. Little strength. Only lasted about 3 months then I was fine for years.
Maybe from a flu vaccine back then. Maybe from a major surgery I had or two minor surgeries I had six months later. I finally just resolved myself that it just didn't matter to me and made peace with that. I've a challenge with this disease to deal with and that's where I need to put my worry and effort. Plus and move my hopes and dreams to match a new lifestyle with disabilities. I've decided to be happy, positive, and thankful that I'm still around family, friends, my children and grandkids. I'm not saying there's anything wrong with trying to figure out the start of the challenge. As a person who loves a good mystery, intense troubleshooting, and figuring out problems, I had to literally tell that part of my personality to just let it go. I did make a decision to just say it was a flu vaccine because that's as good a choice as any and makes as much sense as any other choice. Stress on the body can bring this about as I understand it. Maybe it was working the flight deck aboard an aircraft carrier in the early 70's. Ha. I do hope that you find an answer that satisfies you! That's the most important thing! Hugs!
In retrospect, my CIDP began 3 years ago after the birth of my first son. It started in my hands with tingling and numbness and a little weakness. I just attributed it to a touch of carpel tunnel syndrome or something because I was suddenly carrying a 15lb. + baby with me everywhere. He was so fussy I couldn't put him down! Flash forward to my second pregnancy, and by the time I was 4 months along I developed cramping, weakness, numbness and later footdrop in both feet. My OB/GYN told me it was the baby's head since I carried him so low, and that it would improve with delivery. But, as you can guess if your experience is similar to mine, delivery made it so much worse. I found out in the process of trying to figure out what was going on with my body that I had 2 extruded discs in my back and spinal stenosis. So 6 months postpartum I had spine surgery. With that, I had to wean the baby and that caused another huge flare in my symptoms which persisted until I had my first round of IVIg 3 weeks ago. The spine surgery significantly reduced the nerve pain I was having and I don't regret it, but it never helped with the numbess or weakness. I haven't had any improvement with the IVIg yet, just lots of side effects and it seems to have slowed the progression of the disease for me. My doctor is happy with that for now since I have such a severe case because it took 3 years to get a diagnosis and he believes there is extensive axonal damage. I go for my second round this week.
I am also newly diagnosed and looking for answers. It's incredibly difficult to have a disease like this when you have small children at home... and when you weren't done building your family yet. There are more questions than answers and all your hope and the future of all those dreams you had are loaded up into an IV.
Thanks for the reply Joe. I relate to what you're saying about acceptance and living with new challenges...I've had symptoms for almost a year but just diagnosed three weeks ago and trying to figure it all out. You're right though that at the end of the day it doesn't matter as much because it happened and you have to deal with it moving forward. Some days are easier than others, but trying to be thankful for what I can do and what I do have helps.
Joe D said:
I haven't heard about this possibility. (And one I can dismiss!) I spent some time initially trying to figure out how it all got started with me too. I had some small symptoms nearly 10 years back where I couldn't walk on my heels or stand on my toes almost at all. Little strength. Only lasted about 3 months then I was fine for years.
Maybe from a flu vaccine back then. Maybe from a major surgery I had or two minor surgeries I had six months later. I finally just resolved myself that it just didn't matter to me and made peace with that. I've a challenge with this disease to deal with and that's where I need to put my worry and effort. Plus and move my hopes and dreams to match a new lifestyle with disabilities. I've decided to be happy, positive, and thankful that I'm still around family, friends, my children and grandkids. I'm not saying there's anything wrong with trying to figure out the start of the challenge. As a person who loves a good mystery, intense troubleshooting, and figuring out problems, I had to literally tell that part of my personality to just let it go. I did make a decision to just say it was a flu vaccine because that's as good a choice as any and makes as much sense as any other choice. Stress on the body can bring this about as I understand it. Maybe it was working the flight deck aboard an aircraft carrier in the early 70's. Ha. I do hope that you find an answer that satisfies you! That's the most important thing! Hugs!
I'm so happy to hear from you because you sound like you went through something similar to me. Does your doctor think there is a connection between the worsening in symptoms and pregnancy? I know exactly what you mean about having to care for a baby and not being done building your family yet, I'm in the same boat. For me, my feet were worse during the pregnancy and although my hands hurt I didn't have any motor problems. After the delivery, the fingers on my hand curled under to where I couldn't straighten them and I had muscle atrophy on both hands, along with severe weakness. I couldn't hold a pen, shampoo my hair or open things like food containers or even an envelope. It has improved somewhat but not back to normal. I saw an orthopedist who referred me to a neurologist who recommended carpal tunnel and ulnar nerve (elbow) surgery on both hands/arms. I couldn't use them for about three weeks on each side, and couldn't take care of my baby. Then I was referred to a neuromuscular specialist who told me it wasn't carpal tunnel afterall, this was three weeks ago. I had IVIg two weeks ago and am waiting to see what kind of response I have. My feet are worse than while I was pregnant too. I am convinced this relates to pregnancy and that it may not be caused by it but definitely gets worse. If you google CIDP and pregnancy you will find some info about it getting worse in the third trimester and immediately postpartum, though these are case reports and not giant studies, so I guess doctors can't say for sure what the relation is. I was so hopeful the whole time that things were going to go back to normal after the baby was born and now dealing with the fact that it won't. I was told I have axonal damage as well...does this mean it won't regenerate?
I hope you respond to the IVIg, and I don't know if anyone mentioned this to you but I was told to drink lots of water, starting a few days before the infusion and during the course of it to help cut sown on the side effects. The IVIg makes your blood really thick and the water helps thin it back to normal and keep things flowing smoothly.They probably premedicated you too which should help. Also slowing the infusion rate may help too.
manderine said:
In retrospect, my CIDP began 3 years ago after the birth of my first son. It started in my hands with tingling and numbness and a little weakness. I just attributed it to a touch of carpel tunnel syndrome or something because I was suddenly carrying a 15lb. + baby with me everywhere. He was so fussy I couldn't put him down! Flash forward to my second pregnancy, and by the time I was 4 months along I developed cramping, weakness, numbness and later footdrop in both feet. My OB/GYN told me it was the baby's head since I carried him so low, and that it would improve with delivery. But, as you can guess if your experience is similar to mine, delivery made it so much worse. I found out in the process of trying to figure out what was going on with my body that I had 2 extruded discs in my back and spinal stenosis. So 6 months postpartum I had spine surgery. With that, I had to wean the baby and that caused another huge flare in my symptoms which persisted until I had my first round of IVIg 3 weeks ago. The spine surgery significantly reduced the nerve pain I was having and I don't regret it, but it never helped with the numbess or weakness. I haven't had any improvement with the IVIg yet, just lots of side effects and it seems to have slowed the progression of the disease for me. My doctor is happy with that for now since I have such a severe case because it took 3 years to get a diagnosis and he believes there is extensive axonal damage. I go for my second round this week.
I am also newly diagnosed and looking for answers. It's incredibly difficult to have a disease like this when you have small children at home... and when you weren't done building your family yet. There are more questions than answers and all your hope and the future of all those dreams you had are loaded up into an IV.