Lori222
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June 5, 2011 at 2:49 pm
glad you are posting your sct process–very informative. Were they very particular at northwestern at your previous failed treatments. Im curious, if you are not improving but also not getting worse would they consider that a failed treatment. sounds like they really do a lot of testing to assure you are healthy!!–guess thats good since the sct is probably hard on the body. Lori
June 2, 2011 at 9:49 pmThat was such a nice post to read—I am glad Emily is doing so well : )
May 13, 2011 at 8:02 pmI was diagnosed through emg/ncv followed by labs. during the labs a paraneolpastic panel was run–in which an abnormal antibody was found. After finding the antibody my neurologist diagnosed me and never mentioned any more testing. I am going out to mayo next month and will be curious if they will confirm the diagnosis due to the antibody or will do more extensive tests—will let you know Lori
May 13, 2011 at 7:53 pmno– i have not encountered this, and got ivig last week not too far from the boston area??? I am currently getting 2 gm per kg—loading dose. I am guessing this is an insurance company decision?? How sad when people who do not have medical experience or education make these sort of decisions instead of doctors who have dedicated their life to educating themselves to help others. Lori
April 28, 2011 at 8:27 amjust a reminder….it MIGHT not be related to your cidp–you could possibly just have an overactive bladder, which can be controlled with a simple medication. Probably a long shot, but worth checking into—-sometimes we or the docs are too quick to blame things on the cidp because its such an unpredictable disease….best wishes. Lori
April 26, 2011 at 7:49 pmmany people with physical disabilities continue to drive. As long as you can still safely manuever the gas and brake pedal doesnt seem like your privlige to drive should be taken away. If it does come to the point that you cannot drive a standard vehicle—then you could check into specializing one to fit your needs. I know of a woman completely paralyzed from her waist down that drives using a van equipped with hand brakes and gas.—-where there’s a will ther’s a way!!!!best wishes Lori
April 24, 2011 at 6:41 pmas far as i know–i will be seeing one of the Dr. Dycks—im not sure which one, the father or son. At least thats what my neurologist from MA told me–she said she talked to Dr. Dyck and he agreed me see me???She mailed all of my paperwork, they reviewed it thern called me with an appt.—unless something changed since she spoke with him–i believe thats still whi im seeing. On the appt paperwork they only gave me the date and time and building—mayo no drs name was on it. I imagine since they are working at mayo—one of the top places in the country–they all must be good. From what everyone is posting, it sounds like they are very thorough—thats what i want. I was so afraid i would put all this money and effort to make the trip out there and they would just see me for a half hour and that would be it–but from what everyone has posted, it seems they are very good and it should be worth the trip out there. Lori
April 23, 2011 at 7:25 pmwendy—not sure if what you might have meant by your question was—do some of the ivig infusions have more or less effect than others.—I find that happening to me and asked my neurologist about it. One infusion i feel may have really improved things–then another i might not notice as much improvement?? I was told that possibly, since every batch is from different donors etc..one could be more or less effective—- but also with this disease, having good days and bad days it could be partly that. Lori
April 23, 2011 at 3:04 pmmakes sense to me yuehen—i noticed a drastic weakness from the prednisone on the 4th dose—-have never felt like that from the ivig.
I too believe strongly in adjusting the ivig as per personal response. i have been trying to explain that to my neurologist since starting ivig. that is what im hoping will come of my visit to mayo to see dr dyck—that he will give her recommendations to do just that. We all metabolize at different rates which only makes sense that we would need different amount of ivig per response—not just a standard amount for everyone. If we could only just set up our own treatment plans–lol—we’d all be better by now!! LoriApril 22, 2011 at 9:10 amthats a good tip about just going and waiting for tests–thank you. i will just bring several books to occupy time, because i may as well wait there with the chance to be taken earlier than wait in a hotel room. I would like for my husband to go –but he has work, and we have the kids, the dogs cats etc back home that need tending while im gone–its easier for me to get time off from work than for him. I will be very glad when this trip is over with and hope the mayo has good advice for my neurologist from all this. Did you just go to Mayo for a one time diagnosis? you mentioned flying next time is why i ask? my neurologist made it sound as though i wold go here for a secong opinion and see what they’re treatment recommendations were. that’s why im skeptical about this whole trip—i already have a diagnosis, which partly alrerady came from mayo-(-my labwork was sent there) unless shes thinking they will possibly change the diagnosis? which again seems odd because once you deterct an antibody in the blood that seems pretty sure to me??
I guess the best thing to come of this is they could suggest more aggressive treatment because my neurologist has not been aggressive to this point.——but to travel all that way to be able to get more aggressive treatment——just really hope irts worth it. Dont want to think im going ti go through all this so they can tell her to start getting more aggressive with the ivig—which is what i have been suggesting all along.
did any of you who have seen dr dyck discuss sct with him—what is his view on that? my appt isnt until june–and its amonday morning–so 1 week will give me 5 full days to get testing done. maybe i will be lucky and be done before then and te airline might let me adjust my ticket and fly back earlier. So i am just in the process of setting up flight, hotel and ground transportation once there. LoriApril 21, 2011 at 8:04 pmyes i agree Yuehan–you do excellent research—thank you. as well as dawn and emilys mom—i always learn from the 3 of your posts : ) I never knew that muscle weakness was a side effect of the ivig—isnt that sort of contradictive since we are having ivig to stop nerve attack and increase strength??? learn something new here every day; ) lori
April 21, 2011 at 7:34 pmthis place looks huge and overwhelming—i hope it is worth the stress of planning and doing it all. according to my appointment letter–I am to be at the mayo bldg @ 7:30 am. So i will fly out the day before. this is a monday so im going to plan to stay a week–until fri.—does a week seem reasonable? To answer an earlier ?–I am coming out from Maine—-so yes nearly across the country for me. according to a brochure that came with my letter–most of the hotels offer complimentary shuttles to and from the mayo—–does this include all the buildings—because someone mentioned testing being done in other buildings??? It also stated taxi for trip to and from airport? just mentioning all this and if anyof you have more tips or things to help PLEASE post. I also read that some airlines offer discounts for mayo patients–anyone have success with that? thanks for your imput and help—Lori
April 19, 2011 at 5:27 pmyes i have an appointment in june with dr dyck–I am anxious to go there -and sooo hope they can help with my cidp. i have an identified potassium channel antibody which ive been told is rare—my neurologist has said that if anybody has seen this before and knows what to do it will be the mayo—-so I am hopeful—–I would so much (like all of us) get back to doing the things i enjoy. Before i can really accept having this disease i feel i need to do all i can for it. The mayo are the ones who discovered the antibody–it wasnt until my blood was sent there that it was even detected. i will keep you updated—will be bringing my laptop with me–as i will probably be bored in minnesota. was the hotel attached to the hospital expensive? im going out by myself so convenience, transportation, etc is important. Lori
April 9, 2011 at 8:10 pmhmmm… If that’s the case—ask them if they plan to cancel the policy on every member who has unprotected sex—because there is more risk there than with IVIG!! Lori
April 9, 2011 at 8:07 pmthanks pam— i will check into that hotel—it is within walking distance—like how close??? under a mile? did they keep you in the hospital while you were doing the testing or did you go back and forth from the hotel? I will be going alone so that my husband can stay back home with the kids, pets etc…are most of the tests etc they do things that i would be able to still get back and forth from my hotel —-nothing that requires down time? did you already have a diagnosis before going there? lots of ?’s– i know—just kind of nervous and excited at the same time about this trip. I thought listening to Drdycks podcast that he sounded more aggressive—at least more so than my current neuro. thats why i am excited to go—hoping he will give my neuro recommendations for a more aggressive plan to finally be able to be done with this crap!! Thank you again for your response : ) Lori
