Leg Pain – Doctors Update

I went to see the neuro today and all in all it was a good appt. My strength is getting better and there’s improvement in reflexes and balance.

She really feels that the leg tightness is a heel cord tightness and not a flare of the CIDP. She even had a orthopedic doctor come in and look at it and he said I have full range except for 5 to 10%. He recommends even more stretching. I shared how this pain seems common for people with CIDP, but she still doesn’t see it as a flare up. I don’t know how I feel, I am definitely getting stronger a bit at a time, and that is good.

We talked about waiting to treat and she had some really valid points about not treating when at this point we haven’t been able to establish a pattern. If I am continuing to improve strength wise then she doesn’t want to treat with IVIG now if I don’t necessarily need it. I mentioned your docs name and his philosophy Dawn, and she said that she definitely agreed with that, but I have been so all over the board, she needs more info to establish a pattern.

We also talked about doing another EMG, but it seems like a bit of overkill right now when my strength and physical exam are showing improvement.

In the end we agreed to meet again in 6 weeks and see where we are then. IF I feel any little thing before then I am to call her immediately and she will either see me or get me in for IVIG asap. I can somewhat understand that if I don’t need the IVIG, I don’t need to take it (why medicate if not necessary and the cost of course) So I guess I’m still in a holding pattern, waiting and stretching. If I am still plateaued and don’t feel any better then than I do now then she said we’ll try another boost of IVIG to get me closer to 100%

So, if nothing else, I guess I’m learning patience!