I am new to CIDP. I see everyone posting things about worrying about getting sick. Is there an increased chance of us living with CIDP of catching sick? I did not think our immune system is lower than other people without CIDP. Isn’t our immune system just over-acting and attacking our nerves. We don’t have a compromised immune system do we? I was not told anything about avoiding sick people by my doctor so I was not aware that I am at a higher risk. Does everyone living with CIDP have this higher risk or only people on certain drugs for treatment like the cancer drugs?

I got my initial loading dose over 2 days instead of 5 days too. My doctor said that since I was young and in good health that this should be fine. We did run it in very slowly and I drank so much water to be hydrated during and after for a few days. I still did get a mild head/neck ache after the second dose. It only lasted for a day and then went away. It was not a full-blown headache but it did cause me some pain. Doing better on the maintenance dose every 21 days…running it in very slow now, my infusion takes about 5 hours! But no more headache. Good luck!

I also notice that for about 3-4 days after my infusions that the creepy-crawly sensation in my feet and legs increases and I also get more tingling and twitch or my legs too. Then it subsides for a few weeks until I need more IVIG. It scared me at first and I though the sensations meant my disease was progressing and I was having damage to my nerves. But I have not progressed, no muscle weakness or atrophy. I started to keep a journal and I write down my symptoms every day. I started to look back at previous dates when I have a bad day and compare it to the prevous month. It has put some of my fears at ease because I am starting to see a pattern that my body follows after every IVIg treatment. Now I kind of know what to expect each time and don’t freak out every time I feel this crawly sensation or vibration in my feet. I just write it in my journal. Keeping a journal of symptoms has REALLY helped me. I am fairly new to CIDP (diagnosed just in February 2011). But am starting to calm down a bit and not so anxious as I was in the beginning.

I was recently diagnosed with CIDP (within the past year). I am a mother of a 7 year old girl. It was so scary for me in the beginning too. I felt like I could not be the mommy I always had been. I was even having problems climbing up into her loft bed at night to read with her. I would sit there in the dark crying silently while she fell asleep. I just could not shrug off the depression and anxiety either. I felt somewhat alone too because I did not want to scare my daughter so I did not talk about the diseasae with her. My husband seemed to pull away too. He doesn’t deal well with this. So for a while I suffered in silence. But as the IVIg kicked in and I started to feel like myself again I climbed out of the depression. I talked to my daughter about CIDP. I did not give her all the scary details because I don’t want her to be worried about mommy and think I am going to end up unable to care for her. But I did let her know I needed help from time to time and that sometimes I need to take it easy so that I don’t have pain. She has been great and she feels empowered to help me now instead of just scared and wondering what is wrong with mommy and why am I so sad. My husband has come around too. I think the future scared him just as much as it scared me. We both did not know what to do or how to act right after diagnosis. My CIDP is still active. I need IVIG every 3 weeks. I am trying to push it to 4 weeks this month. Start the IVIg and stay with it as long as you seem to be getting some relief. I did not get total relief at first but now I seem to get better with every IVIg treatment. Since I was diagnosed quickly and started IVIG almost right away after diagnosis I don’t have any permanent damage (yet at least :-)). Stay with the IVIG as it can’t hurt and might make all the difference with your condition down the way. Good luck.

I understand that it is only in trial for now but I hope some day it brings about a treatment that could put an end to all of our suffering with CIDP. Yes, I am not the worst of the worst. I function quite normal except for some pain in my hands and legs. With my IVIg every 21 to 28 days I do get along ok. But it is really hard to fit the IVIg treatments into my life. I feel like CIDP is dictating my schedule. I want to be normal again and not have to sit in an infusion center every 3 weeks for 5 hours. I guess it is only a dream right now and hopefully as more and more people with CIDP get the SCT and react well maybe they will open it up to the less sick and try and stop the disease in its early stage before we have irreversible damage to our hands and feet. I know the SCT is very grueling and there are also many risks with the SCT right now…but I still will dream of a future without CIDP some day. 😀

Welcome. You will find much support and help here at this forum. I am a mother who was diagnosed earlier this year with CIDP. I am lucky though because I started symptoms in November 2010 after my flu shot and got diagnosed by February 2011. So my body only had three months to do damage to my nerves. I have been on IVIG now since March and have seen quite an improvement in my symptoms. Hopefully your neurologist will start you on the IVIg infusions right away. For the people that have a good response it can be amazing so get your strenght and use of limbs back. I am still trying to grasp the fact that my life is no longer as it was before CIDP. I have limitations now that I did not have before. My daughter is only 7 so I am gratful that I am pretty much able to keep up with raising her. I need naps and I can’t do as much physically as I use to but mostly I do what I need to be her mommy. I work full time too. I need to get infusions every 21 days but I am currently not on any other medications. You are on the right path. You now have a diagnosis and can start to get the right treatment so that you can start to improve and get better. Good luck to you. 🙂

There is NOTHING else that could have triggered CIDP in me. I was a perfectly healthy 45 year old woman. Never had any illness or infection prior to the CDIP. 10 days after my 2010 flu vaccine (which included the H1N1) I started to experience numbness and tingling. I am convinced that it was the H1N1 and no numbers or government studies (which I am convenced are riged to be in favor of the vaccine companies) can tell me different. I am no longer a normal, happy, healthy individual all because I tried to keep myself from getting the flu. I would have rather gotten the flu. Most likely I would have recovered within a week or two and would have gone on with my life as normal. Well my life is nothing like normal anymore! Infusions every 20 days, soreness and weakness in my legs and arms, difficulting sleeping, anxiety, depression… I for one will never vaccinate my daughter with that poison again. I don’t trust vaccines anymore.

What are the repercussions from taking Cytoxin? Are there bad side effects and does it cause your body any damage in the longterm? Just wondering because I would like to discuss this option with my Neurologist. My IVIG infusions seem to only last 2 weeks and I can’t imagine getting an infusion every 14 days for the rest of my life.