Sorry you are having problems, my CIDP isnt too bad, am mostly active but losing feeling/strength in my hands.
I couldnt feel a thing during my spinal tap, just laid in bed on my side, slight scratch and that was it, perhaps the fact its in the spinal area is what worries people.
Andy
From what I understand, it use to be bad. I echo Andy's suggestion of plenty of water to hopefully avois the "headache." Also, I laid pretty still for a few hours afterwards.
Today I start my second round of IVIg. This time for only two days, instead of the five.
I wish a good or better day for everyone.
Linda
I cannot thank all of you enough! It feels so good to have support and people who actually know and understand what I am dealing with. I really appreciate the advice and will def use it. Linda, good luck today with your IVIg!
Have a wonderful day everyone! :)
The spinal tap is not bad. The worst part is the 5 hour wait to go home afterwards.
Hang in there you'll be fine.
Thanks Linda,
I hope your round of IVIG goes great! And that you have the support and understanding from family and friends. We don't always get it, but man! When we do, it is awesome!
lindalmcc said:
From what I understand, it use to be bad. I echo Andy's suggestion of plenty of water to hopefully avois the "headache." Also, I laid pretty still for a few hours afterwards.
Today I start my second round of IVIg. This time for only two days, instead of the five.
I wish a good or better day for everyone.
Linda
i had my spinal tap a month ago and it is what diagnoised me with cidp. i was nervous myself and when i went in I said a prayer and I was calm through it all. I felt just a tad bit of pressure but it went quick. I pray that you have peace and everything goes well. I'm in the hospital right now going through my second round of ivig and I'm really hoping i improve quickly and I hope and pray the same for you.
Kim
I was diagnosed with CIDP over 5 years ago and like most others had a spinal tap at that time. My reaction to the procedure was similar to that of those who responded above - no headache, no pain no nothing. I respond well to IVIG and typically see marked improvement within about 3 days of the infusion.
Good Luck
Roserider- Do you mind giving me an update on your five years? Are you somewhat back to "normal"? Do you still receive Ivig? Work? THANKS!!!
Thank you Kim and roserider. Kim that is what I'm going to do. I'm gonna pray for peace tomorrow morning. Prayer always helps calm me. Good luck with your IVIg and I will pray for you as well.
Thank you, rllowe75 - the IVIg went well, both today and yesterday. I just got home, and I am so tired. I don't understand why I do, especially because I was napping almost the entire time. I'm thankful I didn't have any adverse side effects..and hope I am stronger as a result of the infusions. Take care. :)
rllowe75 said:
I cannot thank all of you enough! It feels so good to have support and people who actually know and understand what I am dealing with. I really appreciate the advice and will def use it. Linda, good luck today with your IVIg!
Have a wonderful day everyone! :)
Hi Lori, and thank you! The IVIg infusions today and yesterday went well. No side effects, thank the Lord. I'm just about ready for a nap, even after drowsing most of my time there (3 hours).
Amen to what you wrote about support from friends and family, and I wish the same for you and all who suffer from disords/disease. Fortunately, my sister came for almost two weeks after the hospital stay, and my husband is awesome. I have friends at church who would be willing to help if called upon. It's much easier for me to give than to receive, but it's comforting to know I can call several people if I need to.
Last, but certainly not least, this online support group is "family" as well. It's great to be able to share our stories, concerns and symptoms..and hopefully help by doing so.
Lori said:
Thanks Linda,
I hope your round of IVIG goes great! And that you have the support and understanding from family and friends. We don't always get it, but man! When we do, it is awesome!
lindalmcc said:From what I understand, it use to be bad. I echo Andy's suggestion of plenty of water to hopefully avois the "headache." Also, I laid pretty still for a few hours afterwards.
Today I start my second round of IVIg. This time for only two days, instead of the five.
I wish a good or better day for everyone.
Linda
Hi Kim. Prayers helps more than anything, I think.
I hope you see some improvement with this second round of IVIg.
Kimruck40 said:
i had my spinal tap a month ago and it is what diagnoised me with cidp. i was nervous myself and when i went in I said a prayer and I was calm through it all. I felt just a tad bit of pressure but it went quick. I pray that you have peace and everything goes well. I'm in the hospital right now going through my second round of ivig and I'm really hoping i improve quickly and I hope and pray the same for you.
Kim
Dear Linda,
What a beautiful sentiment. It is tough to receive when we are the ones who often do the giving, but it sure keeps us humble and works something rich in us...to be vulnerable and dependent on someone else is a golden experience. I am amazed at the humility of the Lord in all His suffering. Just so thankful He paved a way. Keep sharing that lovely smile!
lindalmcc said:
Hi Lori, and thank you! The IVIg infusions today and yesterday went well. No side effects, thank the Lord. I'm just about ready for a nap, even after drowsing most of my time there (3 hours).
Amen to what you wrote about support from friends and family, and I wish the same for you and all who suffer from disords/disease. Fortunately, my sister came for almost two weeks after the hospital stay, and my husband is awesome. I have friends at church who would be willing to help if called upon. It's much easier for me to give than to receive, but it's comforting to know I can call several people if I need to.
Last, but certainly not least, this online support group is "family" as well. It's great to be able to share our stories, concerns and symptoms..and hopefully help by doing so.
Lori said:Thanks Linda,
I hope your round of IVIG goes great! And that you have the support and understanding from family and friends. We don't always get it, but man! When we do, it is awesome!
lindalmcc said:From what I understand, it use to be bad. I echo Andy's suggestion of plenty of water to hopefully avois the "headache." Also, I laid pretty still for a few hours afterwards.
Today I start my second round of IVIg. This time for only two days, instead of the five.
I wish a good or better day for everyone.
Linda
i had my one and only spinal tap in june 2011 i was scared too! The emg left me crying and the spinal tab was no problem. just a bit pressure i had good instructions and a very clean enviroment. i was told to drink a lot of caffeine rich products to help prevent headaches, and to not irritate my spine by trying to lift myself out of the wheelchair etc.
i have to be on monday back to get an emg and wish that it will not be so painfull. i hope you have the same good experience i had with the spinal tap and have some one caring for you afterwards. follow the instructions and think of a "happy place" to relax. The resting afterwards was very important don't lift or do anything for a day afterwards. I hope everything goes well!
I've had the tap three times in my life. No problem. A little like a bee sting but it doesn't last but a second.
Dear Lori,
I agree, and I think it also blesses the lives of those we allow in to give of themselves. I know this in my head, but it's still difficult to put into practice. Yes, He set the supreme example for us, and with His help I need to humble myself. I'm amazed that He loved me enough to suffer so that I might be forgiven and return to Him one day. It is beyond wonderful!
Thanks again!
Linda
Lori said:
Dear Linda,
What a beautiful sentiment. It is tough to receive when we are the ones who often do the giving, but it sure keeps us humble and works something rich in us...to be vulnerable and dependent on someone else is a golden experience. I am amazed at the humility of the Lord in all His suffering. Just so thankful He paved a way. Keep sharing that lovely smile!
lindalmcc said:Hi Lori, and thank you! The IVIg infusions today and yesterday went well. No side effects, thank the Lord. I'm just about ready for a nap, even after drowsing most of my time there (3 hours).
Amen to what you wrote about support from friends and family, and I wish the same for you and all who suffer from disords/disease. Fortunately, my sister came for almost two weeks after the hospital stay, and my husband is awesome. I have friends at church who would be willing to help if called upon. It's much easier for me to give than to receive, but it's comforting to know I can call several people if I need to.
Last, but certainly not least, this online support group is "family" as well. It's great to be able to share our stories, concerns and symptoms..and hopefully help by doing so.
Lori said:Thanks Linda,
I hope your round of IVIG goes great! And that you have the support and understanding from family and friends. We don't always get it, but man! When we do, it is awesome!
lindalmcc said:From what I understand, it use to be bad. I echo Andy's suggestion of plenty of water to hopefully avois the "headache." Also, I laid pretty still for a few hours afterwards.
Today I start my second round of IVIg. This time for only two days, instead of the five.
I wish a good or better day for everyone.
Linda