I'm still waiting on confirmation of a CIDP diagnosis. My LP was yesterday. But based on the above what fits my symptoms the closest is sensory-predominant CIDP. At least for now anyway as I'm just 7 weeks into the symptoms starting. I say this because while I cannot run, and while i trip, and am wobbly, and I roll my ankles sometimes, I am not weak. I do not get tired. I can pick up heavy things (although probably not advised). And the nerve conduction study still showed the slow conduction velocity.
I found (and still find) this description of my legs hard to convey. It is more like whatever short-twitch fast-reaction is needed to push off to jump or to run is gone. But I wouldn't describe it as weak.
Anyway. No questions here. Just yammering and sharing the above link.
My neuroligist just called (on a Saturday, kudos to him.). CIDP confirmed. CSF showed protein level was 187. He said normal is 40 and the upper end of normal is 60.
He recommends IVIG as initial course. Will work on treatment plan on Monday.
Sorry to hear that, but at least you have an official diagnosis. Many people suffer for quite a while before getting any type of diagnosis. The IVIG helped me tremendously, but took a little over a week to kick in. My neuro has recently suspended my IVIG until my SED rate comes down as I was suffering with a nasty persistent headache for well over a month now. The best advice I can give to you is to hydrate well the day before and the day of your infusions to help minimize the side effects of the IVIG. When I had my first infusion, the nurses couldn't bring me enough warm blankets. By the time I was done, I think they said I had 13-14 blankets. If you begin to experience side effects during the infusion, ring the nurse so she can slow down the infusion rate. I didn't know what to expect with my first one and tried to tough it out which was a bad mistake. From what others have said and from what I have read, the first infusion is the toughest, and then they get easier with each one. I hope the IVIG brings you relief soon. Take care.
Thanks Sunshine. It was just the official confirmation of what we already thought, so it is not a surprise. In fact I'm happy to have a diagnosis now so that I can take the next step and get treatment.
I don't know what an SED rate is. I'll look that up a little later.
Glad you got a diagnosis so fast. It took 6 months and 5 doctors from my first symptoms until a confirmed diagnosis. By then I was in a wheelchair. My advice about IVIG is also to stay very hydrated starting several days before the treatment. Also realize that you really won’t feel great after the treatment so don’t plan anything for the first few days afterwards. I usually get a mild headache near the end of my 48 hours and then nausea on the 2 hour drive home. They now give me something for both during the last several hours of treatment. Also, if you have trouble with them finding good veins ask for a port. I kept thinking it would get better as I began gaining my strength back, but it only got worse. I now have a port and it is a breeze. Good luck and learn that this is your new normal. I have had to learn how to slow down and accept that I can’t do as much, but have found that I now have time to truly smell the roses instead of staring at them through a window.