A few thoughts

My neurologist says I manage my body better than he can, and he is well recognised in his field...after 13 years...I think I should do!

We will all eventually find the right balance of IVIG that keeps us steady best, and for how long, and when we need a top up. I keep a diary on myself ...I am very important to me, you see!. lol Just as you should be seriously. .

We each, know our own bodies best, and are told with this disease, we are all differently effected. There does not appear to be a magic potion that suits all. We must monitor ourselves and say what we feel our body needs, when we are most tired, what makes us shaky,... note when we stub a toe, take a fall, and stick our guns when talking to your neuro person. Have notes! It's your body...you know it best..it works for me.

Lifestyle ,is relevant for me, alcohol and cigarettes both take my legs from me, with immediate effect. Sodas are full of aspartame, as are most edibles. Refrain as much as possible, read the labels for aspartame and E's .

I find its up to us to try and help ourselves...and this site is where you can start.

Plasma exchange is to be considered as a last resort, I have this on good authority. In my view it would be better at point of diagnosis.



Happy - You're right. I try to eat as much "whole food" as possible & avoid processed. I figure if I can't pronounce an ingredient, it's not going into my CIDP sick body. A friend asked me the other day if any of the many, many doctors I've been to over the last 2 years before diagnosis ever asked how I ate. Not a one of them!!

At last two people agree! Result! I have asked ALL the pro's I have seen.."can you put a group together for me so we can do comparisons of lifestyles"....still .waiting after 7 years. It is like the Chinese and "losing face". Cannot be seen not to know...they pass you to someone else...sad there are so any of us, and most in the U.S

I am diagnosed since 2000, my GP missed me for 4 years...said I had a trapped nerve in my neck.

Maybe here we can do some good. Good to hear from you. Keep in touch.


Ha! My primary care doctor (of over 20 yrs) told me a month and a half before my neurologist diagnosed me that "once we got my depression under control, most of my other symptoms would probably go away." In other words, it was all in my head!!! My symptoms started mid-2011, became markedly worse in January 2012 and I was diagnosed in Marcy 2013.

I never thought about it before until my daughter pointed out "They are only general practitioners Mum , you need to take responsibility for yourself, nowadays". I rarely ever saw a doctor prior to this so did not make the G.P connection....silly me !

This sight is new to me as of today. I feel somewhat relieved listening to all of you. My husband has only been sick sine Oct and thought he had carpel tunnel until it started to effect his face, lips, tongue, toes and now breathing. We are starting IVIG treatments today. My husband is a very healthy, active 55 year who has had a flu maybe twice. I have so many questions such as will he be able to continue to work? Will he ever have energy again and be pain free. The hands are the most painful and he is loosing strength daily