Reply To: New working diagnosis of CIDP, starting pred

So no, i have not had an LP yet. I actually ended up referred to an ID specialist instead to rule out lyme back in March. Well i dont have lyme disease at least, but also no LP. I saw him again the end of May, and he explained he’d prefer to hold off on an LP due to my mild and atypical presentation, since it may show nothing yet is an invasive procedure. Then i call in complaining of my worsening paresthesias and weakness, and he rxd pred. Mind you CIDP is still on the top of his differentials, which I’m taking his word for despite being so asymmetrical and minimal on the motor symptoms (he never mentioned the lewis sumner subtype). This is a pretty piecemeal way of doing things in my opinion. I have a university nearby doing a CIDP clinical trial but it’s 6 months to see a neuro sadly. I’m stuck for now.

The last 4 days on pred have been unbearable, so much i want to initiate a taper now. My left foot up to my knee and left hand up to my elbow burn worse than before up until the evening on and off. Frankly, despite having access to systematic reviews and meta analyses, and other doctors at my hospital, there is no good explanation of how the symptoms actually onset or feel from a patient perspective, probably due to the rarity. Nor did i read anything on temporary worsening of symptoms on treatment from neural regeneration which can occur with other neuropathies. It’s odd, as it’s like sudden yet creeping attacks of burning and weakness periodically. It’s as if what I’d imagine a TIA feels like only somewhat slower, if not for the fact that was ruled out and i have no risk factors, and the sometimes bilateral nature of it. Also i figure after a year i would have stroked by now. Very disconcerting.