well said Patty 🙂 what an uplifting post.

yes–the p in cidp is for polyneuropathy. Sjrogens was one of the first things my dr suspected too, i did not have the eyes, nose etc symptoms either, just the neuropathy.
It was ruled out without the lip biopsy. I ended up later on having a sural nerve biopsy at the Mayo clinic to get a definite cidp diagnosis. I figured it would save me in the future from ever having to fight for treatment from my insurance company in the event they ever require it.
good luck with getting a diagnosis—it can be very frustrating not knowing and going through test after test.

I had an adverse effect with prednisone. Lost weight instead of gaining as most do. Did not gain any strength, my calve muscles atrophied quickly during my prednisone trial—-the whole trial gave me a set back.
In hindsight, I should have called my dr. and got off it–but I kept thinking I just needed to give it time.
So just be careful on it, it can have some bad side effects for some people–then others tolerate it fine. hopefully you will be one who has success with it 🙂

I would ask for your Dr to start the ivig as soon a spossible if i were you. Its the safest treatment with the least side effects.
Stress and anxiety can worsen the symptoms of cidp. So even having to worry about your treatments etc adds to the stress.
I have found that having a plan helps me cope with all of this. Be very open with your dr. ask him/her whats next? what if that doesnt work? how long should i give it? I write down all my questions prior and discuss them right off the beginning of my appt.
plus knowing what you will try next if one thing isnt working will give you time to research it, ask others experiences etc–let your Dr know this.
i also share with my dr what has been successful for others from here. Example she told me “that if ivig doesnt work then plasma exchange wont either” I told her there have been several members who have had great luck with pe after ivig failed.— My next step if ivig fails is now pe.
Finding a dr who listens to you and respects your suggestions is so important with this disease. even if they need to send you other places to get a diagnosis or testing—you can do that and still keep the same dr. good luck with your upcoming appointment, i hope you find answers—and dont leave until you have a treatment plan in place 🙂 it will help with the stress!! Lori

what about “diabetic” socks? They are made high to come up over your calves, suppose to aid in circulation,and I would think they should be warm, since diabetics are prone to cold feet. Plus they’re sold quite reasonably priced at most wal*mart etc type stores.
I also remember seeing socks with little heaters built in if you want to get real high tech— i believe it may have been on ski wear sites. if you google socks for skiing or cold out door weather they should come up. Lori

sounds like you are in the same spot as me right now. I am still in the process of ivig but am not feeling that it is working as well as i’ve read it has for others on here. i was diagnosed in june of 09–so have definitely given it time. my next step, its looking like December will be plasma exchange.
my dr has suggested rituxin if the ivig/pe both fail. Im thinking if im going to end up doing chemo–why not just go for the sct???
It is a confusing disease!!! I think from reading the posts of people who have done the sct, is that it has worked–and they wished they went for it sooner—i dont want to wait too long and be feeling that same way—I am 47 so okay agewise for sct. my walking is affected from the cidp, slower and bad balance, but am able to walk independently. arms/hands not affected. i do not want to wait to get worse before getting sct. I think if i fail another treatment (plasma xc) i might be a better candidate??? But…after reading the rituxin info–it looks like almost the sct benefit, just slower ?? lori

thanks for posting—I am sure if i start on rituxin i will read through your jourmal again during the process….great info. congratulations on your cidp remission. hope you continue to improve 🙂 Lori