Lori222

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  • Lori222
    July 29, 2011 at 9:35 pm

    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

    Lori222
    July 28, 2011 at 9:39 pm

    That is such good news—glad to hear she is doing good 🙂 I can’t even begin to imagine how hard it must be for a child to go through this. that is one thing that I am greatful for—is that if someone had to get this it was me and not one of my children. From all of your knowledge and posts on this site i am sure you are the reason Emily is where she is today Kelly. Hope all continues to go well for her and she can be done with ivig for good one day. Lori

    Lori222
    July 27, 2011 at 6:51 pm

    I hope everything is going well Linda 🙂 my thoughts are with you. Lori

    Lori222
    July 6, 2011 at 10:00 pm

    I did NOT respond to prednisone and both the Lahey clinic in MA and the mayo have diagnosed me with cidp—while at mayo i had every test there was for the cidp—lumbar puncture, nerve biopsy. I actually got worse very quicly on the prednisone–was on 60 mg—weigh 140, so it was a pretty high dose for me??? lori

    Lori222
    July 6, 2011 at 9:57 pm

    what do you mean by “strong frequent doses of ivig” ? I am wondering because, I too recently went out to mayo for a second opinion. I havent received my formal written recommendations from them yet—but he verbally told me he was thinking an aggressive course of ivig–but wanted to wait for my nerve biopsy results before writing it out. I saw dr Dyck while there. i am just wondering what your ivig schedule was after going to mayo? Lori

    Lori222
    June 25, 2011 at 8:25 pm

    Larry— not sure what tests you have already had—but if you look at my post regarding the mayo clinic, it might give you an idea of what a week of testing there will be like. I just got back from seeing dr dyck there. have not got my full report or recommendations yet.
    Regarding the pain—I feel for you. I had never experienced it, but was told i might feel some after the nerve biopsy—a sprouting pain as the sural nerve is the one biopsied??? The first time i got that shock of pain it brought me right up out of the chair–was like nothing i had ever experienced!!!. Fortunately it has been lessening as my biopsy area heals….but if that is what nerve pain is like then i just want to say how sorry i am that you are experiencing that–it was horrible. : ( Lori

    Lori222
    June 25, 2011 at 5:50 pm

    I have read many posts here where members have said that ivig did not work for them and then pe did. My neurologist told me that if ivig isnt working then most likely pe won’t either??? After reading of many who were successful with pe after failing ivig I think if the more aggressive ivig doesnt improve things then I too plan to request pe. Lori

    Lori222
    June 25, 2011 at 5:40 pm

    I read then re-read again and again on all these tests—here ,other (less knowledgable sites) different hospitals/doctors opinions etc before heading to mayo for my second opinion. I know there are many who will disagree– but i went to Mayo with the thought that i would do any test offered or available that would help find a treatment for this disease. It is so rare anyway. then take into account everyone who has it has different symptoms,responses etc. It was a tiring week and i did not enjoy it at all—but in the end I am glad I endured it and went through with every test available for cidp. I do not mean to influence your decision at all—but sometimes even having a test that comes back negative can rule things out and bring you a step closer to finding appropriate treatment. for those that have correct diagnosis and are receiving treatment thats effective this isnt such a concern—but if what your currently doing isnt working then keep searching,testing asking etc until it is—-this is the phase i am currently in too. : ) Lori

    Lori222
    June 25, 2011 at 11:30 am

    sounds like you have had quite a week too—hope you are feeling better and all goes well at Northwestern. Thank you for the advice—yes i will keep a journal of my ivig progress. so far–having ivig every 12 and then every 6 has not given me significant improvement. I am hopeful that a more rigorous approach will–but am ready to suggest PE if it doesnt. after reading several posts from people here who responded to pe after not responding to ivig I have been wondering if I should just ask for a trial of it to see?? Did you have a set point at which you were determined you were ready to switch from one proocedure to another? I am finding that part to be stressful—my neurologist suggested i give the ivig a year at 12 weeks, now another at 6 weeks—–dont these people realize a year is a long time to be unable to do everyday things we enjoy??? Am i truely being an unreasonable patient to want quicker results than a year? Lori

    Lori222
    June 24, 2011 at 7:15 pm

    the headache is slowly but surely improving. yes the caffeine did help once i got to the point i could hold it down–i had extreme N & V with the headache–also vertigo : (
    Yes Kelly I am VERY glad Dr. Dyck is suggesting an aggressive ivig approach to try to put the disease into remission. I cant wait for his report so i can get started!!! still waiting on the nerve biopsy results to finish up.
    Although— I am a bit upset that my own neurologist wouldnt try the aggressive ivig without Dr dycks recommendation. I have been giving her e-mail links and podcast links to his sites which recomment this more aggressive approach for quite a while now??? Lori

    Lori222
    June 10, 2011 at 9:18 am

    The dymylinating part is why I was wondering about it—When i asked my current neurologist a few months back (after ruling out paraneoplastic,which she originally considered) what she would consider my “diagnosis” she answered” VGKC antibody induced chronic inflammator polyneuropathy” I replied that she left out the D–and she feels strongly– she said she didnt feel it was dymylinating?? (The vgkc is medical for potassium antibodies) I know you knew that Yuehan–lol. Lori

    Lori222
    June 9, 2011 at 6:12 pm

    OMG your post gave me a good laugh—-not that i thought it was funny that neither of the Dycks did a thing for you–just your way of posting it was hilarious!!! Too late for me to back out now–hotel reserved, plane tix bought and week off from work—hopefully they will have some useful suggestions. I hope all goes well at northwestern for you. What is your level of mobility right now ? my hands/arms are not affected, feet, ankles and calves are weak. I can walk unassisted but its tiring, no running,jumping,tiptoes or heals. no autonomic involvement at this time.
    Lori

    Lori222
    June 9, 2011 at 5:56 pm

    I dont have cancer—I have chronic inflammatory neuropathy with an indentified potassium antibody—no cancer. But where i go for my ivig for this, there are people there having chemo for cancer. They all pass by where i am getting my ivig to get to their section–thats why i noticed the neuropathy gait on a lot of them. I would love to be able to socialize with them yuehen—but the areas are all sectioned off so everyone is seperated—-otherwise i WOULD tell them that the neuropathy they’re getting from the chemo is going to be worse than the cancer!!! Why does the chemo we use for cidp or the chemo done with sct not cause neuropathy but chemo for cancer causing it???

    Lori222
    June 8, 2011 at 9:42 am

    i agree–after reading here. I was diagnosed 2 years ago. Have been pretty patient with ivig , pred–which made me worse, and a conservative neurologist–who I really like, but she isnt being very aggressive. My plan is to get Dr. Dyck from mayo give some treatment recommendations. If nothing improves with his plan then YES—-contacting northwestern!!! By then my kids will be back in school and it will be easier.
    Does the Dr at northwestern feel you will regain the strength and feeling after the sct.How damaged are your nerves—are you walking? I wondered if there was a timeline on the nerves—if they have gone so long can they still regenerate ? I have read posts from others who have had sct and it seems they are regenerating nerves–even axonal damaged nerves that have been damaged for a while. Was interested on the drs opinion on that at NW—did they say how long was too long for nerves to heal?
    What about previous treatments–were they really strict on how many other things you have tried and failed? Age must also play into their decision? such an interesting procedure–i wish it was discussed more by all neurologists as a treatment option. Lori

    Lori222
    June 6, 2011 at 10:40 pm

    I am currently scheduled to go to mayo for a second opinion—next week, actually 🙂 . 12 years is a long time for you to have had to deal with cidp—I’m happy you got in for the sct. I have not really had any aggressive treatment for my cidp yet and am hoping that is what will be accomplished at mayo. So as you said— it would probably be a bit radical for me to jump to sct right now without trying some other things first. Im thinking maybe more frequent ivig, plasma exchange or even some sort of chemo drug first, before going to northwest. thoughts are with you–hope it goes well 🙂 Lori

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