going to bed not knowing if you will wake up paralyzed?

Yup, been there, done that. Scarey stuff.

1. Do compression socks help?
Dont know, never tried them
2. Can CIDP really be a B12 deficiency? It seems to me that the myelin sheath in made up of B12, B1, and B6 so if you can’t absorb those vitamins then wouldn’t your sheath become weak? How is it that neurologically CIDP presents different than a B12 deficiency?

My B vitamin numbers are good or at least they were last time checked.

3. Has anyone tried lithium for CIDP? I think there are different types of lithium so the one I’m taking about occurs naturally in the body.

Li hasnt been presented to me as an option nor have I read of it.

4. Has anyone who is still capable of driving/walking tried to get a handicap sticker for CIDP?

Yep. Dr filled out form, I sent it in. Card arrived in mail. Renewal is next year and I expect a repeat of the process. I dont always use it but Im glad I have it on bad leg days. And you will be surprised how many people have them with all spaces filled sometimes.

5. Does exercise/stretching actually work because it seems to make my muscles worse?

Interested in other replies so far. Havent gotten good info from Neuro or PT. My mind says it should be useful but figuring how much to do of what and when frustrates me trying to do on my own.

6. If CIDP is an autoimmune disease then wouldn’t it be something genetically we have always had? If so then how is it possible to catch it in early stages? I guess that means you catch it during one of the first flare-ups?

7. How long do IVIg treatments last? How many hours sitting? Can you walk around while you’re plugged in and do stuff? Will I be able to go to work the day following an IVIg treatment?

As mentioned, depends on your dose and infusion rate. Mine is now two days about 3 hrs each day at high dosage, but I tolerate it well so far. At lower doses I was around 4 hours on 1 day.

Yes you can walk around and there is often an at home option as mentioned whether nurse administered or a self infused subq with pump. Some get a headache or other reactions next day, but an aspirin/Tylenol and staying hydrated lets me get around the next day most times although I sometimes feel a bit fatigued.

2016 was the first year I did not have a flu shot since…forever. Neurologist suggested to skip it which I did with no issues, although I did a lot of hand sanitizing and reducing my attendance at high population events.

There may be no connection, but I did have a couple of vaccines, one of them for the flu, a few weeks before the CIDP showed up and kicked into full blown disease.

I used to get SOB on mild exertion pre-DX, but that seems to have calmed and other tests e.g. cardiovascular showed nothing. Not long ago my neurologist did some type of pulmonary breathing test to establish a baseline. Said my numbers were good.

My BP dropped kind of low on day 1 of IVIG but not had any repeat of that.

Do you mean Plasma Exchange which is the same thing as Plasmapheresis (see recent post here in forum)? Those are not the same as IVIG infusion.

Thinking about it though, maybe it depends on the context plasma infusion was used in. I havent heard that term before, but IG is part of blood plasma and extracted from donors so I suppose IVIG could be considered a type of plasma infusion/transfusion but as mentioned, I havent heard of IVIG referred to like that. Hopefully someone more experienced will be along and clear it up.

I am at 15 months and still doing arm/hand sticks. I too can be a tough stick but the nurses at infusion center do a good job of getting it first try most times. Discussion of ports has not come up with doc yet

Ive been on Prednisone for quite a while at different strengths from 10 to 120 mg a day. I dont think it helps much but the neuro throws higher doses at my cidp when the ivig isnt working as well as usual. At 10-20 mg+ my vision gets blurry, and right now my sleeping hours and patterns are horrible, have gotten increased eye pressure so Im on glaucoma meds and now have drug induced diabetes. We are on another taper down schedule I hope we can stick with.

If it works for you with minimal effects, great, but be aware it can be problematic. Oh, yeah, Im also up about 30 lbs and with the cidp walking/balance issues, exercise is kind of limited to get the weight off.