Need Help– serious decision

    • Anonymous
      November 17, 2007 at 4:05 pm

      I have posted so many times, I can not find a Neuro with experience with our disease. So NOW. I have an appointment at KC Neuro. dept. Jan 25. and now my Cllinic here in SD arranged an appt. at Mayo, Rochester Feb 5th. I have to decide which is better place, driving time both 6 hrs. Ms. Katzman here in GBS.Cidp recommended K.C. and now a good recommendation for Dr. Klein at Mayo. Think I am definitely joining the Tavern room. I need help.:eek:

    • Anonymous
      November 17, 2007 at 4:16 pm

      Is it possible to do both? Then you can see which one you like better.

      It would suck to pick one now and to cancel your appointment with the other then to meet that dr & decided that he/she isn’t for you. Then you’ll either have to stick with the neuro you don’t like or have to wait for months again to get in to the other one.

      You can be upfront with both of them telling them that you aren’t sure which one you want to go with & you wanted to meet with both.

      I compare it to buying a new car. Why is it that we will spend MONTHS & MONTHS researching and test driving and talking to people about our cars but with our dr’s we feel like we have to pick one over the other without ever meeting either? I think you should meet both, test them out & then make your decision…if it’s possible of course.


    • Anonymous
      November 17, 2007 at 6:01 pm

      You might not like either one of these but think about if they are able to contact or network with other doctors that are familar with your illness. I know the Mayo does network on rarer stuff. My Doctors were not able to give PP but they networked with a larger hospital out of their group and sent me there after the IVIG did not work. I think that was partly because of my Neuro was not afraid to admit he was not as familar as this other Doctor was and he was in constant touch with him from the beginning. Takes a special Doctor to admit he is not familar. I was impressed with my team from the beginning they were quick and started right away to rule out diseases with tests. You were not able to find a liason in your area that might know of someone that attended either of these hosiptals? Next be sure they accept your health insurance. Find out if your insurance would cover your visits if you were to look for a second opinion. If you are able to aford to pay for one yourself it might be worth it to see both.

    • Anonymous
      November 17, 2007 at 7:08 pm

      It’s a shame you aren’t closer to St. Louis, I would definatly reccomend Dr’s Parks and Lopate at Barnes Jewish, they both specialize in neuromuscular diseases and have no problem going to bat with the insurance co’s for some of the more expensive treatments.

    • Anonymous
      November 17, 2007 at 7:53 pm

      Regina, I would go to both also. Especially if they both come to you highly recommended. 2nd and 3rd opinions are not uncommon, ins should cover both. Good Luck!

    • Anonymous
      November 18, 2007 at 6:06 pm

      Sometimes that second, third and/or fourth opinions do more than nudge your local doc into the correct treatments! Happened to me? Once my local doc go the testing and bloodwork, with only the spinal to be done…HE did it! The rest is history. He got docs higher up the ‘food-chain’ so to speak to take the rap for the diagnosis…so to speak HE was/is off the hook-just complying with higher levels of expertise. Now if that local doc remains a trogdolyte after all that expert input…Well, having another city or resource to go to for follow-up should be a blessing. Cover all bases, so to speak?
      As for your journey to Mayo and where-ever? I will hope for a warm rain, nothing worse during your travels to and from. Winter does make it more well, awkward, doesn’t it?
      BTW, some of my blood, spinal and other tests were sent both to Mayo and Athena Diagnostics in CA….The fact that I was double-checked out probably didn’t hurt? Redundant maybe, but results from both were totally consistent. Kind of reassuring in a way…

    • Anonymous
      November 19, 2007 at 10:42 pm

      Thank you all for the advise. I read carefully and did alot of thinking.
      We are thinking the trip to Mayo might be the right one. We were there back in 1974 with our daughter. With the price of gas, I think we will only be able to make one big trip. We are retired, this lovely gift of CIDP came when I got my Medicare card. I still have alot of fishing to do, if I can just get down to the river.
      I am hoping Dr. Klein at Mayo can get me on the right regime of meds and treatments. My family Dr. is happy to follow a plan, he just admits he doesnt know about this. I suggested a crash course back at med. school and he just shook his head. I tried. We lost our terrific Neurologst last Dec. he is no longer practicing. I am awfully tied of all this, but will keep on fighting like all of you. Regina

      Lady Kit, I think I should have stayed in Pittsburgh instead of moving out here t the Wild West. Wonder what hospitals you go to. I used Magee when I was living back home.