r&rmama, I feel for you. My child did not get CIDP thank goodness but I did. I guess I would rather have it than watch my 7 year old struggle the way I am struggling. My heart goes out to you. I am also angry and a little bit bitter because I got CIDP from something that was suppose to make me stay healthy. I also believe the big drug companies no that these vaccines cause problems but hey, they are big money makers so what if a few people get chronically sick…they are making a BIG profit! That is all that matters to them. I am doing ok with my treatment and trying to go about my life as normal as possible. But I get down when I am in the infusion center and I hear all the pumps from the machines and I start to cry…i feel sick at that point and realize that this is my life now. I was sitting in the infusion center yesterday (using up one of my precious PTO days) when my sister was at the loca water park with MY daughter because I could not be there. My vacation days are now saved for my infusions….no more summer days off in the water park with my child…all because of the flu vaccine! Good luck to your child. I hope things settle down so that she can go on with her childhood and enjoy the little things that kids are suppose to enjoy 🙂

I wish and wish I could redo that day when i got the flu vaccine. I usually don’t get the darn flu vaccine because I am a strong believer that they don’t do any good. I did not know that they could do such harm too. That morning I decided my 7 year old daughter should get the vaccine since her school was really pushing for all elementary kids to get vaccinated. I thought I should be the big adult and just do it. It took me three different Walgreens to find one that had a shot available. I finally found one on the third try and then took my daughter to her pediatritian for her shot. I think the fact that I got shot down at two other Walgreen clinics before I found one able to give me the shot that it was someone from up above trying to persuade me to give up and not get the shot. A warning from above. But i was persistant and did not give up and now look where I am. CIDP for life. I would have gotten over the flu if I had gotten sick but I won’t ever get over CIDP now. People shoud definitely think long and hard before getting vaccines in the future. I know I will NEVER get another vaccine and I won’t give my daughter any more of her childhood vaccines either. I won’t take that chance that she will end up like me.

I was taking Melatonin for occasional insomnia before I was diagnosed with CIDP. I was still using it after CIDP but I read on the lable it recommends not taking Melatonin if you have an immune system disorder. So I stopped taking it for sleep for now. I was wondering why it says this or what it does to cause problems with people with immune system disorders. Is CIDP consideres an immune system disorder? I was just wondering thats all. Thanks.

Hi skblaine. Did you have to be on the prednisone long-term? Did you get side effects? Were you able to get off the pred and or go into remission? I ask this because I have only been on IVIg and my neurologist said that usually with IVIg infusions a person doesn’t go into remission. The IVIg will hopefully keep helping me with my symptoms and keep my CIDP at the point it is at now without getting worse but that I will probably need it forever. But he said that i could try switching to pred and try and put it into remission…he said he has had better luck with pred and remission. But I don’t want the side effects and am afraid of the weight gain and round moon face in the long term.

My neuro told me that I have atypical CIDP also. I transfered to a CIDP specialist at the U of MN after initially being diagnosed and treated by a different neuro. I transfered because I thought being in the care of a neuro who specializes in CIPD might be better than just a plain neuro. Anyway, the specialist said that if he was first seeing me and I did not have all the lab reports to back up my diagnosis he would not diagnose me with CIDP. But all the lab reports say I do have CIDP. I have the elevated spinal protein and abnormal EMG. But I don’t have anything abnormal on my neuro clinical exam. I have no weakness or loss of sensory sensation or reflex. Mostly I have tingling in my feet and hands that comes and goes (worse at night when I finally get off my feet). I also have some pain and aches in my calves and fore arms and a vibrating or shaky feeling at times. I have been getting 40 grams of IVIG every three weeks now for about 4 months. I do see improvement after I get the IVIG. I almost feel normal after IVIG and start to think maybe I will be able to put this behind me this time. But then around the 19 or 20th day I start to feel the tingling and mild weekeness in my knees again so I know the disease is still active and i need more IVIG. But I don’t seem to be progressing to anything worse than what I have right now and hope I stay that way. It is depressing to think I will need IVIG for the rest of my life to feel somewhat normal but if this is the worst I get I can live with it. Weird thing is I feel worse after drinking my coffee in the morning. It must be the caffine. I am also very anxious since being diagnosed so i think sometime the anxiety of this disease for me is causing a lot of my symptoms or at least agravating my symptoms. My opinion is I would get the Lumbar Puncture so that you can put your fears and anxiety to rest. If you don’t get the lumbar puncture you will never know if it would have given you a diagnosis. Just my opinion. Good Luck.