thanks everyone 🙂 i have been reading through a lot of rituxin discussion on here and have learned a lot. i have never been told i had the anti mag type of cidp—just told atypical cidp. after reading the rituxin discussions i checked my labs and i do have elevated igm. I, also like others mentioned in their posts, got worse with prednisone.
sounds like the rituxin knocks out your b cells not your whole immune system like cytoxin does. I will keep reading and have many questions for my dr before the time comes to try this. 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

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

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