Going To The Mayo

    • Anonymous
      October 7, 2006 at 7:58 am

      My doc. has finally agreed that IVIG is not working very well to stop my CIDP progession after over two years. He is now sending me to the Mayo in Rochester. My appt. is December 7. Does anyone have any suggestions as to what I can expect? Is there anything I can do to be better prepared? Any suggestions on the best place to stay if I’m not admitted, or for my family if I am.

    • Anonymous
      October 7, 2006 at 10:24 am


      I know that this doesnt answer any of your questions, but …… Have your docs considered Plasmapharesis, I wonder if that may give you better results. It is more invasive though. I hate pushing meds, but I know that there are a number of people on the forum who have seen wonderful results with Rituxan, but I know that it can sometimes only be done through a prescription from an oncologist (sp?), who can work with your neuro. You probably know all this, so I apologize if I have just repeated what you know.

    • Anonymous
      October 7, 2006 at 10:52 am

      Terry, a lot of times you can get discounted rates on hotels if you go through the hospital to make arrangements. Might be a good idea to check it out.

      My wife has a tip for your family. Rochester is relatively small but it has the best “Tuesday Morning” store she’s ever seen. It’s on the westside of town.

      December in Minnesota may be pretty cold. Prepare for snow. We lived in MN for 12 years one hour north of Rochester. One Christmas it was 20 below at night. Check the weather report before you leave. Maybe you’ll luck out and there will be a warm spell. Anyway, as any Minnesotan will tell you, the cold builds character.

      Good luck.

    • Anonymous
      October 7, 2006 at 11:47 am

      Ali,my doc has not offered any other kind of treatment, frankly I don’t think he knows they exist. My last visit he told me ”I believe you know more about CIDP than I do”(thank’s to this forum), thats why he has referred me to the Mayo. Over the last two years I’ve told him about alternatives, but it’s like falling on deaf ears. He may not be certified to administer anything other than IVIG, I don’t know.


      Thank’s for the info. Twenty below??? I don’t think I need that much character. (brrrrrrrrr…..) No, really that won’t be much of a problem. Before I got sick, one day I was in a boat fishing with a high that day of 9 degrees. It get’s cold here in ”Bammy” too. What’s a ”Tuesday Morning” store? Never heard of one around here.

    • Anonymous
      October 7, 2006 at 2:29 pm


      I have advice for you relative to insurance coverage at Mayo. I live in California, and went to Mayo Scottsdale AZ. Mayo Clinic charges premium rates for their services, and they do not discount them to insurance carriers who are out of their contract network. Therefore, my insurance company only covered about 20% of the Mayo bill, and I was left with the rest to pay, even though I was long past paying my decductible for the year.

      For instance, Mayo billed about $700.00 for the initial consultation with the specialist. It was a very thorough, 1.5 hour visit, but it is more expensive.

      I have no idea of this would be of concern to you, but I throw it out to you.

      Check with your insurance company, or probably better yet, check with Mayo in advance to clarify your exact coverage, then you will have no surprises.

    • Anonymous
      October 7, 2006 at 10:13 pm

      We took my daughter to Mayo when she was 3 years old to get the diagnose. They were wonderful! You are probably seeing Dr. Peter Dyck and/or associates. They turned my daughters life around. This was 7 years ago. Usually they schedule a series of appointments over a 2 day period. All appointments are one hour long. All the specialists talk with each other, it is amazing. When we went we did not know what was wronge with my daughter therefore we met with orthopods, genetics, immunolgy, nerurology, eye doctor etc.. we had blood work each visit, spinal tap EMG, Surial nerve biopsy, MRI… Got the diagnose and Abby got a port-a-cath in and her first IVIG. We went home and then they couldn’t get her medicine in Chicago she her neurolosts at Mayo went to Mayo pharmacy, packed the meds. and shipped it overnight to us!

      They were one of our many “Godsends”

      We always stayed at a “country Inns and Suites”, free hospital shuttle and breakfat in the morning.

      The thing I found amazing was that we were not charged interest when it took us about 3 years to pay off the balance, $150 a month and they were happy.

      They were wonderful!
      Would love to hear more from you or talk. [email]cindy@fletch.com[/email]

      Goog Luck!

    • Anonymous
      October 7, 2006 at 10:58 pm

      I went to the Mayo in Rochester this year. In fact, I have another appointment in about two weeks. I am seeing Dr. James Watson. The neuro department has so many great docs. Before your appointment you will receive a packet of info. which will inlcude hotel information, etc. As far as the cost of medical services go, they are expensive but then again, they are [U]so [/U] thorough. I got pre-approval from my insurance company so they paid for the whole thing. Be sure to bring a copy of all of your pertinent medical records, test results, x-rays, etc. If you have any specific questions that I can answer, please let me know. You can e-mail me directly or over the message board. I wish you the best of luck.

    • Anonymous
      October 8, 2006 at 11:00 am

      Hi Terry

      It will be interesting to see if CIDP is all you have. I say this because my docs at Hopkins dxd me with CIDP and CMT, a genetic peripheral neuropathy. Because I have both no one knows what to expect with the IVIG, but we’re still moving forward. I imagine that Mayo operates similarly to Hopkins, which was a whirliwind of activity during my inital visits. The doc says, hmm, maybe we need a lumbar puncture, and a day later its done! And perhaps the best part of these highly reputable hospitals is that the docs actually consult with each other, so you benefit from having more than one specialist reviewing your case.

      Best wishes!

    • Anonymous
      October 9, 2006 at 10:58 am

      Terry, “Tuesday Morning” is a “closeout retailer”, a cool shop of deeply discounted home furnishings and other interesting items. They are not open all the time. You can find out if they are open on-line at tuesdaymorning.com

    • Anonymous
      October 22, 2006 at 12:21 am

      Greetings – I would be happy to chat with you outside of the board if you want to contact me. I spent a week and a half at Mayo in Rochester the end of May and early June. Quite the experience.

      I was diagnosed with CIDP in 2001 and have had many ups and many many downs. IVIG had lost effectiveness and I had also had severe reactions.

      That in conjunction with several test results from spinal taps over the years always left some questions about my condition.

      My Mayo visit was a whirl wind but I found that they took alot of time with me. ALL test were repeated and I mean all – from taps to catscans to mris to blood work to nerve conductions. Very thorough. I will say that if you do not have good insurance that you can ask ahead of time and control what they do. They prefer to have all test results before they do anything.

      It helped that I had gathered all my previous history and made a summary in advance that gave them a chronology of events and that I put all my tests in order.

      I had a list of detailed questions ahead of time.

      Depending on how well they can schedule you – you can be in and out in a couple of days. Three is a good estimate but if the weekend falls in between then add more days.

      Unfortuneately for me I had a bad catscan and ended up staying. They did offer to refer me back locally for additional testing but I chose to stay and get care there.

      It was humbling being in the clinic that actually clincially discovered and named cidp.

      I would be happy to share my info in more detail if you have questions!

      I wish you well!!


    • Anonymous
      October 22, 2006 at 12:25 am

      Oh yeah – I saw Dr. Klein – and I live only a few hours from Rochester and it is already below freezing here and has snowed 3 times! We stayed at the Sheraton connected to the Clinic – sounds expensive but we bought the stay through priceline!

      Lisa – [email]starfamily@hotmail.com[/email]