getting a new neuro

    • Anonymous
      November 6, 2007 at 11:49 am

      What a day already today I just found out my doctor set me up with a new neuro since mine left for CA awhile ago and I have no idea if this one even has a clue about CIDP. I hate having to go to new doctors and have to explain a condition to them. I have done it for years with my son and now I have to do it for myself. I am hopng for an open minded doctor but with the luck I have had in the past I am worried. I see him on the 14th at 8:30am which of course I hate morning appointments but if I did not take it I would have to wait until sometime in FEB or MARCH. Which tells me he is very busy so willhe take the time needed for my appointment or push me through and not listen, who knows. Then after getting this set up I get a call from my sons surgeon in MN and he was calling to see if I could bring him in next week, UH NO, they want to visit aout his next surgery (which will be his 52nd or 53rd not sure anymore) which we don’t want to have done until after school is out next summer. It has been three years since his last surgery and they were updating his file and say he needs this done this year but my son wants to wait until school is out. On top of this I took a doosy of a fall yesterday and my back is killing me and I have my appointment for a fitting for a powerchair finally so i have to try and get ready before my husband gets home to take me. Sorry its been a long day already today.

    • Anonymous
      November 6, 2007 at 12:43 pm

      Hi Jody, I hope you find that Neuro. Guess that is what we get for living in the Dakota’s. I have been trying to find one for a year now. Please be careful with those falls.
      We have a lady Vet. for our pets. She told us–remember you are hiring and paying for a doctor or clinic and they should answer to you. I am trying to go by these words. Good luck, Regina

    • Anonymous
      November 6, 2007 at 1:36 pm

      My best wishes to both of you with a new dr. About a year ago when I was not willing to accept this CIDP diagnosis, I went on a search for a new neuro. It wasnt b/c I dont like the one I have…I just wanted another opinion in hopes that I’d be told it wasnt true. I called another local group here in Omaha and was told to send in all of my medical records and the drs would look them over and decide if they wanted to take my case.
      THAT made me mad and eventually, I gave up and gave in. I have no probs with my current dr and he’s young so hoping he’s going to stay put.

      it is no fun going thru all of it again…trying to explain… know this just from trying to find the right new primary dr. Maybe you can get your records and take them with you.

      Jody, may I ask how old your son is ?
      Sounds like he’s been thru so much and I’m sorry you have to deal with CIDP on top it.

      take care.

    • November 6, 2007 at 2:30 pm

      I am so sorry you have to go through all of this. I am feeling guilty about complaining about Kevin’s port issues compared to all you have to deal with. I agree, if possible, wait till school is over. I have begun to figure out that normalcy for kids is just as important as the medical aspect when dealing with childhood chronic illness. Based on comments you have posted me with encouraging wishes to Kevin from your son, he seems like a very compassionate, strong, well adjusted boy. You have done a great job keeping things regular for him. I hope I too can do the same!

      The power chair should make things easier for you, that is some good news! Regarding the new doc, give him a chance, maybe if he is not well versed with cidp, he will be mesmerised by the condition and research it. All the info you get from here could be helpful as well. Sometimes I print factual info that people post when it is of interest to us and our doc is happy to check it out. I am sure you will have good luck, I feel it!

      Thanks for all of your kind posts and well wishes, I wish the same for you and your family!
      Dawn Kevies mom

    • Anonymous
      November 6, 2007 at 2:52 pm

      You should put together a book of all of your test results, treatments, & a history of your illness – from your 1st CIDP symptom up until present day. Then you can hand it to the dr instead of sitting there trying to remember every single thing yourself.

      I’ll keep my fingers crossed that this neuro is a good one & will listen to you. Maybe the fact that he’s busy is a sign that he’s good. Just trying to be optimistic….

      I agree with your son. The dr’s should wait, IF POSSIBLE, until school is out to do any surgery. He needs to live a normal life. I think that is essentially to a child’s well being.

      Good luck.

    • Anonymous
      November 6, 2007 at 8:17 pm

      thanks everyone. Kendal is 16 now but I was told he would never see his first birthday so doctors in my opinion are known to be wrong. I have informed many that they are in a Practice and are not perfect. They either laugh and agree (those I like) or they become offended (those I walk ot on). It usually gives me a good idea of what I will have to deal with. My eval for the powerchair went well but it will be 2-4 weeks before I will get it. I do have to say that I have learned alot from my son over the years and he really amazes me at times. Dawn I always thought that I could never do it either for a long time but believe me it does get easier, it doesn’t seem like it now but after awhile it wll be second nature (unfortunately) for you both and your son will have the same type of attitude about it all as Kendal does. I talked to the surgeon again and told him what Kendal said and he agreed, as he said Kendal has been through surgery so many times that he knows his own body better than anyone so we wait. Thank goodness! I guess I was kinda feeling sorry for myself this morning but I will do whatever I have to with the neuro and I am sure he will just love my book of info I already have done up. LOL Regina67 where do you live at anyway? I am lucky with the fact that I have a great family doc and physiatrist who back me up on everything but wow the new ones can be a pain I guess I will just have to wait and see, yaaaayy!
      Again thanks everybody