Mine is mostly in my feet and legs, mostly numbness but sometimess I get these random sensations that feel a lot like being zapped with a stun gun. I do have tremors in my hands though so my dexterity has suffered. My case seems minor too compared with others I’ve been reading about but I suspect it’s only because I was diagnosed before it could progress any more. So far I have yet to get IVIG because of the shortages (hopefully coming this week…) . My Prednisone has been cut to 30mg/day and it seems now that it’s only holding it off from getting worse.

I’ve also noticed sensitivities to temperature. Everything from taking a shower to drinking cold drinks. I’m wondering if others have this as well.

I actually had a call from a nurse to come out to do it, then found out later she assumed the Privigen had already been sent out to me. That was a couple weeks ago. I’m still waiting.

In the meantime, I saw my neurologist and she cut my Prednisone down to 30mg/day. At this point, I don’t feel like I’m getting better, just not getting worse.

I too have been waiting for IVIG due to the shortage. I’ve been on Prednisone for about 3 months now since being diagnosed. The only problem with it so far is it jacking up blood sugar for several hours after taking it. Originally with highs around 250-260 but now seeing some over 300. I have much less pain. My energy not only returned but then had too much and became restless. My weight started going back up after going from a healthy 180 to 145 lbs.

I was on 60mg but recently lowered to 40mg and seem to be slowly relapsing now.

I do have concerns about steroids because of the long term damage they cause so am willing to give IVIG a try.

I too was vitamin D deficient (19). I’ve been taking 5000mg a day and now up to 39.

I see some mentions here of people drinking alcohol. I quit before being diagnosed when this nightmare started. Then I read it’s listed as one of the causes of demyelination so now avoid it like the plague, though I miss having an occasional beer.

I’m in a similar situation. I was diagnosed in July with CIDP. Insurance has approved IVIG but it’s not available because of the shortage.

My neurologist put me on 60mg/day of Prednisone, then reduced to 40mg after my last visit. At 60mg I was hyperactive but it was improving things. Since the reduction I’m seeing at best stability but I’m also seeing some fatigue return. The worst part is it is wreaking havoc with my glucose levels, with huge spikes (often over 300) and a big crash later in the day.

I suggest reading up about the steroids. They help but continued long-term usage can create a lot of problems. I’m hoping to at least try the IVIG to see how well it goes.