possible quesions to ask new neuro

    • Anonymous
      December 13, 2007 at 9:37 pm

      I see the new neuro on the 19th and after the last fiasco I a wondering if there are some specific things I should ask so that she will understand what I need. I know I need to try some type of treatment and that is why I agreed to go into the hospital in Nov and then the neuro walked. I have gotten worse since my oral surgery and now have a powerchair to get around my house because of no use of my legs and little to none of my left arm and hand. I have made a list of several of the meds mentioned on this site for CIDP and the IVIG and PP but are there some specific things I should ask? I have been dealing with this since March of this year and the last time in 2001 but never got treatment and eventually 14 months later I did walk on my own again but this time everything is getting progressively worse and I do not want to stay in this chair forever. Hope you all can give me some help with this so that I can get something done soon so that I can start to feel better. I am on 75mcg fentynal and 10/650 lorecet for my pain which does manage it somewhat at least tolerable. I was taking lyrica but it wasn’t doing anything but making me sick to my stomach so I am not taking it anymore so other than the meds I am on for pain I do therapy not at the hospital but at home doing the excercises they gave me to do and hydrotherapy in our hot tub. Again any help would be appreciated, thank you.

    • Anonymous
      December 14, 2007 at 11:25 am

      Make a list and take it with you. Ask about each med and what determines when it is prescribed.
      What about PT at home? And OT for arm?
      How are you managing housework, etc?
      Thoughts and prayers are with you.

    • Dawn Kevies mom
      December 14, 2007 at 1:48 pm

      I suppose I would bring any test results I have so you do not have to repeat them. If you go to the hospital records dept it would be more expedient.

      I currently am compiling info to reference to when I call Kevin’s doc after he returns from his vacation. At that time I am going to tell him what we will and will not do. The research references from the medical journals will be my proof.

      Maybe you can start printing out some research and reference it against your questions, concearns and what you would like done. If it were me, I think I would ask for a couple of loading dose treatments 2g/kg over 4-5 days. In 30 days, I would repeat the same process. Several studies I have read say that only one loading dose is necessary and then maintenance (1g/kg) can begin, but I would feel more comfortable with two. That is what we just completed with Kevin yesterday. The doc wanted to continue these loading doses till Feb. and then do cell cept. Kevin is no where needing cell cept and too young, not to mention all of the other info I found on it. I will reference this info when I state my argument. So I want to start 1 g/kg for one day every two weeks. Maybe for a year or so, then try 3 weeks and so on.

      Maybe you could ask for some sort of schedule of maint. after initial loading doses.

      Ask how long you should wait to see results from ivig before you shout consider pp with ivig, or ivig w/ imuno supres. (cell cept)

      Also, ask if you had blood drawn for IGg levels or maybe even what Norb has. Get any and all blood tests out of the way.

      Sorry my thoughts are so disorganized, I only have a few minutes as Kevie just fell asleep after a very rough night from ivig.
      Good Luck,
      Dawn