Lori222

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  • Lori222
    October 12, 2011 at 8:56 pm

    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

    Lori222
    October 10, 2011 at 9:53 pm

    thanks Erin for the info—interesting:)
    I wonder if the fats in the GAPS diet had to do with helping your cidp. I dont know anything about that diet, but I have read that good fats help with the healing process of nerves. With the food choices you mentioned, it seems there are lots of fat choices in this diet.

    Lori222
    October 8, 2011 at 8:57 pm

    it is great to hear succes stories. i was interested in what your experience going off the ivig was? I am currently on a 16 week weekly ivig schedule in attempt to “reboot” my immune system and stop active cidp. you mentioned that you got weaker before getting better once going off the ivig–did your dr say that was normal?
    I find the holistic approach and treating the whole body not just the disease interesting . glad it is working for you

    Lori222
    October 5, 2011 at 9:45 pm

    congratulations 🙂 that is good news. good luck with your evaluation.

    Lori222
    September 28, 2011 at 9:53 pm

    mungo—what about exercises where your feet stay in one place, stepper, bike or eliptical? i find these easier right now with my ankles being weaker.
    The right person is not going to care about your weight or ankle braces—you will meet him when you’re least expecting it 🙂

    Lori222
    September 28, 2011 at 9:44 pm

    Im not sure–but am curious to see if anybody knows. The only time I was given a mri was to rule out MS back when they were first trying to diagnose me, then again when they were checking my thymus gland.
    At neither of these did they mention inflammation, I didnt even know a mri detected inflammation. Its a good ?—hopefully there will be info on it.

    Lori222
    September 25, 2011 at 7:16 pm

    my ivig was like that when i was getting it every 12 then every 6 weeks. I really had to question whether it was working or not- it was so hard to tell.
    I think i was on a roller coaster–getting a little better after having it, then getting worse before next dose…over and over and over.. My nerve biopsy showed a pattern of demylination—remylination and i wonder if that was what i was experiencing?
    my cidp is very slowly progressive so its hard to tell when its getting better or worse. with the weekly ivig. i have lots of stange sensations, like muscle aches, pains in my toes, but my feet have become warmer, walking is easier, less fatigue.
    If the disease is still active after this 16 week ivig trial then i am going to request plasma exchange. I do not want to be on ivig forever. I have read a lot of posts here of people who have put the disease into remission with plasma exchange after ivig failed to do so. Its much easier on the body than prednisone, chemo etc and i would hate to resort to any of them without trying pe first.

    Lori222
    September 25, 2011 at 6:56 pm

    glad to hear that Kelly 🙂

    yes Dick i think you are right, the few issues i have had with my insurance company have been due to coding–once i got that corrected, the bill was promptly paid

    Lori222
    September 23, 2011 at 10:24 pm

    both neurologists i have seen have said that remission is what they are aiming for.
    My regular neurologist said that she was concerned of the ivig because she didnt want my body to become dependent on it—-because she has seen it often??? The plan im currently on is a 16 week ivig schedule in attempt to “reboot” or “modulate” my immune system.
    This was Dr. Dycks–mayo clinic regiman. After the 16 weeks i am to see my regular dr or fly back to mayo to see him–is what he put in the plan.
    I dont reallty know what she meant by becoming dependant on ivig, because it appears that a lot of people do it forever. guess i wil find out the end of this trial.
    They both sound as though the ivig is not something to be on forever–just a step to change my immune system and if it doesnt then on to something different.

    Lori222
    September 21, 2011 at 9:28 pm

    what about plasma exchange for you? Im not real familiar with it, but it seems ivig alters our immune system by adding all these donor antibodies where as plasma exchange alters the immune system by filtering out anti bodies.
    just a suggestion cuz it sure sounds like the ivig is really giving you horrible side effects—sorry you are having to go through all that on top of having this crappy disease 🙁

    Lori222
    September 21, 2011 at 9:08 pm

    i hear you—really miss being active with my kids, i used to play and coach so many sports with them, its hard to just sit and watch—especially the big family kickball games 🙁 i am the competative one.
    AND…..my golden retriever has really been putting on weight without my long walks with her. I feel bad, she used to get so excited just seeing the leash.
    Im hoping in time…i am seeing small improvements on the 16 week ivig regiman im currently on. 9 weeks to go.

    Lori222
    September 20, 2011 at 6:46 pm

    kelly—sounds like Emily is doing good with the fewer infusions 🙂
    How is she doing without the port and getting the iv? Glad she is doing well. Hopefully one day she will be free of treatments.

    Lori222
    September 18, 2011 at 8:46 pm

    there is another post—under “ivig reaction” where someone posted a rash that sounded like yours. Name was beba. Can get info on most anything here with the search link:) good luck.

    Lori222
    September 17, 2011 at 2:30 pm

    have been contemplating this myself—but both my own Dr and Dr Dyck recommended giving the ivig a more aggressive approach and longer try…..so thats what im doing now. But–i feel as though im wasting precious time that i could be out having fun and enjoying life,if i could just get rid of this crappy disease and get on with life Seems like sct is doing just that for people:) best of luck with your appointment

    Lori222
    September 17, 2011 at 2:10 pm

    were you pre-medicated with benedryl before your ivig?

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