Reply To: Random questions for those who have CIDP
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.