Leg Pain – Doctors Update

    • Anonymous
      May 20, 2008 at 10:54 pm

      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!

    • May 21, 2008 at 12:49 pm

      Hi Marjie,
      That is how we started. We had three relapses before we decided on a regular plan. Kevin too felt good w/out the medicine. We would go about 4 1/2 months before a symptom would occur and 6 months before it was BAD. We just decided on this plan. FYI the ivig only last 42 days max in optimum conditions, meaning your body does not use it up sooner. So any time after that is time w/out ivig and time for a demyl. or relapse to start. Once that starts, the healing starts all over again.
      Her suggestion to come in six weeks was reasonable and her suggestion to call as soon as things change was awesome. Be watchful and comply. Six weeks would be the longest I would let Kevin go for a while, I would not want to risk our healing progress. Your doc sounds reasonable and willing to work with you, I am happy for you. That makes a world of difference with this disease. I guess I would expect nothing less form Drs. at Rush. I love that hospital!
      Good luck and best wishes.
      Dawn Kevies mom