well said Dick S 🙂

yes gh-cidp that has helped me a lot too. the first time i went into the infusion room with many people on chemo, and some severe MS cases, i had an awakening–and a whole new outlook on life and my condition.
Fortunately i am able to walk unaided. just slower and it is more tiresome than pre-cidp. Cidp has affected mainly the things i did for enjoyment–sports, hiking, running etc but i am fortunate to still be able to do the daily tasks like working, shopping etc. Being on this site has made me realize how fortunate i am because it could be worse.
none of us know what is in store for us in the future—-a young mother in a town near mine was riding her bike this weekend with her children, hit a pothole, went over the handlebar and is now paralyzed from her neck down—and she was perfectly healthy. 🙁

I have never taken klonopin myself but work in the mental health field and have worked with people who were on it.
Klonopin can increase the affect of other medications you are on. For some medications this can be a good thing–example I had a person who could take less of his medication for seizures because the klonopin boosted the effect of that particular med. In some cases depending on the medication this may not always be a good thing.

best of luck with your appt on friday–i hope you get some answers . The mind is a powerful tool so thinking optimistically helps.
Yes i know what you mean about overdoing it—i find when i do it causes fatigue, but i dont THINK it is necessarily causing me to get worse???? Again everyone is different.
I try to lift weights reguraly so i have something measurable to go by in terms of strength. A lot different from my old weight regiman,where i used to mix it up a lot to see gains—now i keep it the same so i can watch for loss.

thatg’s discouraging–i thought that we only had to fail 2 treatments to be considered. Hopefully with all these pioneers paving the way it will soon be a standard treatment for cidp. Then hopefully it would be able to be done locally for us instead of having to travel to Northwestern, it sounds like that is a wonderful place but it would be easier to do it closer to home/work, family etc.

haha yes yuehan–i would say you have been very patient with the ivig and given it plenty of opportunity t work if it was going to.
I just finished the 2x per week for 1 month and am now doing 1 x per wk for 12 weeks—-thats as long as i plan to give it before asking to try the PE.

yes i agree—the ivig math is confusing….my error above though—I received 130 gms per day for 2 days on my loading dose 0f 2gm/kg. It is based on your wt—i weigh 144. So as long as you know what your rx states–your’s will just be divided 5 x instead of 2.
I recommend always checking out the lable on your ivig–just to be sure, especially if your getting it in an infusion area with lots of others.
Then to confuse us even more—-some are rxing ivig dosing on ideal weight rather than actual wt. because the solutoin is not fat soluable.
good luck with it—-i hope it works good for you. Lori

Dont feel bad about having sad days—i think we all have them with this cidp. Its hard not to remember all the things we once could do so easily and enjoy—that now seem so difficult.It seems when im having one of those days of feeling sorry for myself—something will happen that makes me realize that even thought things are different–things could be worse. I was having one of those days today while driving—(one of the angry-why me days) and i happened to notice a bulletin board outside a church that said—“life is 10% what happens to you and 90% how you deal with it” its funny how such little things can make a difference, I took the message personally and snapped out of my mood–lol Lori