Thanks everyone for the info—-I’m excited to get started with the new schedule–if all goes well i can start next week—I am changing over from getting them at the Lahey in mass to a local small hosp nearby. Hoping that goes okay–but cant really afford to miss work and go 3 hours away for an infusion now that the frequency is increasing. I was surprised that the increase made you weaker Yuehan—dont think ive ever heard anyone say the ivig did that before.
No, i have never had low wbc from the ivig—and same with me–have not been sick at all since starting it, even when im near others who are. But I was rarely ever sick before ivig either. Did have a strange thing happen with my blood tests at mayo though—i had just had a loading dose of ivig 3 days prior to my labwork, the dr mentioned that he thought i had hep b??? I have had the 3 series of immunizations for hep several years ago. anyway it turns out–i do not have it—but the ivig can give false positives for it. Lori

My insurance covered all of the tests related to cidp, nerve biopsy, lumbar puncture, etc (there is a post on here with every test they did on me) I am still in the process of appealing a a pet scan that was done due to a paraneolplastic antibody found. The costs of the testing was around 30,000–5,800 of that was the pet scan.
My out of pocket expenses were airfare and hotel. I stayed at the value place—very basic, no frills , but new and very clean. I paid 180.00 for a week there. They had shuttle service to and from mayo, also to walmart, where you could get groceries. I flew right into Rochester airport, paid a little more for this, as it is a small airport—very easy to manuever. i did use the taxi service, this was also very reasonable priced.
Mayo was great at scheduling all of my tests and follow up appt with Dr Dyck in four days. My appt with him was on a monday morn, he is very thorough. I started tests that very day. My trip out there would have been all fine–had i not ended up with a severe lumbar puncture headache and then vertigo.
In the end , yes im glad i made the trip. I have a definite cidp diagnosis and a more aggressive ivig schedule. If no improvement from this 16 week ivig I am going to request plasma exchange.
If plasma exchange doesnt do the trick , then i am contacting northwestern to see if i qualify for a sct.
I feel much more at peace just having this plan in place. before going out to mayo, i didnt really have a plan. The diagnosis is pretty definite with a nerve biopsy and lumbar puncture.
hope this helps–if you have any more questions feel free to ask.
there are seven centers of excellency listed on here, which people have had great experiences with. i chose mayo mainly because i had listened to dr dycks podcast on ivig dosing and wanted to try it. lori

oops i missed some of your questions—I got my date in february and it was scheduled for june. gave me 3 months to arrange airfare, hotel ,get time off from work etc. They did say on the letter to call if this did not work and they would give me another date. They are great—the whole town seems to be somehow functioning around mayo. When i missed my first flight due to being sick from the lumbar, the airline told me on the phone that i needed to pay an extra 100.00 to reschedule. when i got to the airport I had my credit card out ready to pay and the tix agent there told me to “put it away–that they take care of their mayo patients here in rochester” and he’s right –they do 🙂
as for the testing, each one will write a descriptive report.Dr Dyck will go over each test with you one by one on your final day–follow up appt. some of mine werent ready and i had to wait to get them in the mail. Lori

not at all elmo—im happy to share my experience. my neurologist from Lahey sent all of my info from there to Dr dyck at the Mayo. I told her i wanted to go there and she contacted Dr. Dyck for me.
The post is “my torturous week at mayo” dont get discouraged by the tiltle—i got a horrible spinal headache from the lumbar puncture, so i was referring to that and tryinh to fly home with headache and vertigo was the worst.
My first appointment with dr Dyck was 7:30 on a monday—getting there by 700 should be plenty of time. he talked for over an hour with me, then decided on tests. All of my tests were scheduled mon–tues–wed and thurs—with a follow up appointment with him thurs afternoon. its amazing how well they coordinated all of the tests. all of the tests are within walking distance—even for me with my new slower cidp walk–lol.
they will give you a schedule all printed out for the times, places, test prep—very thorough. i
If i didnt happen to get the spinal headache–i could have flown home early. on monday Dr dyck asked when my flight was and got everything scheduled for me in 4 days.
The people at the mayo are extremely helpful—- People at the motel were helpful as well. i stayed at the value place—yuehan had told me about it, its online if you google rochester mn value place. there are no frills here but clean and cheap.
They gave me a 3 month notice of my appointment so i had plenty of time to prepare, i got the date about 2 weeks after my dr sent out my packet. The timing was very good i thought—being its the mayo clinic!!
im not sure if dr dyck takes patients directly or if you need a referral from your doctor. There are others on here who have gone there as well—maybe do a ” mayo clinic” on the search button and see if they all had referrals or went on their own. my cell number is 207 890 6324–if you decide to go and have any questions while there call and i will help if i can.
you will need to take a taxi from airport to hotel—i saved the # right in my cell, was nice to have the taxi in the event you didnt want to wait around for shuttle. i was at the hospitals doing tests mon thru fri. there were always breaks between the tests, but it was easier to just stay at the hospital and just go back to hotel at end of day. feel free to ask any more questions you may have Lori

no but it aggrevated my horrendous spinal headache and the vertigo that came with it–on the way home.
I have found that when I’m stressed or upset it really aggrevates my cidp. This week a long time friend of mine lost her 18 year old son in a car accident. Seems the emotional roller coaster is really hard with cidp.
I had this happen once before when some complications occured with my sisters baby delivery a year ago and i thought it was due to the prednisone ( i was doing a trial of it at the time) but after this week i think that a lot of emotional stress is very aggrevating to my cidp, made me feel weak and fatigued. Walking seems much more tiring. It is said that our bodies dont know the difference between emotional, or physical stress. I think i would rather have the physical because i can stop that at any time, the emotional not so easy. Lori

thank you Linda 🙂 about a month left on the weekly ivig—so 3/4 of the way done. Minor improvements, not sure if it will be “wait and see” for a little while after or onto plasma exchange.
I have mentioned to my dr that if ivig or pe dont do it— then I plan on applying to northwestern for sct. I figure if its onto chemo or immunsuppressants may as well go all the way and do the sct.
I am glad you are doing well and that your pain is gone. have you noticed strength or sensory changes yet? Lori