Update and questions….

    • Anonymous
      December 1, 2006 at 3:08 pm

      Emily had her spinal MRI today. The dr came in to tell me the results of the brain MRI & the spinal tap done last week.

      Emi’s last brain MRI (12/05) showed inflammation of the 7th cranial nerve. The MRI from last week had NO inflammation!

      Emi’s last spinal taps (12/05 & 4/06) had elevated protein levels of 93 & 96. The spinal tap from last week had NORMAL protein!

      Could this mean that she is in remission? Could she have only had GBS but it relapsed in April? (first flare up was in Dec 05) Can you have slight demyelination with only GBS?

      I have to wait until next week to get the spinal MRI results.

      We’re going to see an immunologist Dec 18th to talk about the mold & to see if she thinks it’s something hereditary.

      Should I celebrate yet? I want to get excited SO badly but I know better. We’re going to do 3 IVIG treatments next week, 2 the week after & 1 the third week then we are going to stop them to see what happens. We’re doing it like this so we can wean her down from the IVIG since she’s gotten so much of it.

      Kelly

    • Anonymous
      December 1, 2006 at 4:31 pm

      Emily’s dr just called. There is inflammation along her spine from the lower lumbar down. She said this is common with CIDP. But she also wants to test for Charcot Marie Tooth. I researched CMT and I really don’t think that Emily has that. She did have the symptoms (same as GBS/CIDP) last December but they went away with the IVIG. My understanding is that CMT is progressive & IVIG wouldn’t make it better.

      Is it possible to have no protein in her spinal fluid but still have inflammation from CIDP or GBS in her spine?

      My thinking is that we were told that the 1st areas affected by GBS/CIDP are the last to get healed. Maybe the inflammation started her spine, she had foot & leg pain first, and that it will just take more time for the spine to heal as well.

      I’ve gone from being hopeful & optimistic to being scared & nervous.

      Thanks,
      Kelly

    • Anonymous
      December 1, 2006 at 11:03 pm

      kelly, its good news that the protein levels are normal, and nothing showed up in the brain mri. you both are in my prayers, i’m hoping you will get the answers to all of your questions. it must be sooo hard to not know what is going on with emily, not being able to make her pain go away forever. it is really hard to deal with something you don’t know what it is. i can answer one of your questions about the protein levels, i have had soo many lp since aug 05, the 1st was only slightly elevated, 2nd was higher, 3rd went down to normal. then i had aseptic menigitis from ivig and that sent the levels sky high. there is a slight chance (8 to 10%) of gbs/cidp patients having near normal and normal protein levels. i am still affected sensory wise, i have had infections seen on mris of the spine but the protein levels were normal at the same time. i had demyelination prior to my first gbs event in 05, had severe pain and pins, tingly feelings in my lower back down to my toes, i was never dx with anything, yet the ncv/emg that i had showed absent f waves and a few other mild problems-still had no dx or treatment. i’m praying emily can get back to having a normal childhood that all kids need to have, happy and running around carefree. you are doing all the right things for her, you are an inspiration to all moms and dads!!! keep up the good work, and positive attitude! don’t worry about the future, about the results, what will be will be, you are such a strong person, you will make it through everything that comes your way and emilys’ way. please keep us updated on emily’s progress and test results. my fingers are crossed for a good dx. take care and please give sweet emily a big hug for me.:)

    • Anonymous
      December 2, 2006 at 8:35 pm

      Hi Kelly

      I can really appreciate how stressful it is waiting for a diagnosis. Want to let you know that I and others in my family have CMT, with varying degrees of disability. Everyone walks independently, including my 68 y.o. mom and 70 y.o uncle. The good news is that diagnosis is more straight-forward with genetic testing, although there are variants as yet identified. Its my opinion that CMT is alot easier to manage than CIDP, but that may be because I’m more familiar with CMT. And IVIG still scares me.

      Let us know how it goes!
      Helen

    • Anonymous
      December 3, 2006 at 4:38 pm

      [QUOTE=Emily’s_mom]Emily’s dr just called. There is inflammation along her spine from the lower lumbar down. She said this is common with CIDP. But she also wants to test for Charcot Marie Tooth. I researched CMT and I really don’t think that Emily has that. She did have the symptoms (same as GBS/CIDP) last December but they went away with the IVIG. My understanding is that CMT is progressive & IVIG wouldn’t make it better.

      Is it possible to have no protein in her spinal fluid but still have inflammation from CIDP or GBS in her spine?

      My thinking is that we were told that the 1st areas affected by GBS/CIDP are the last to get healed. Maybe the inflammation started her spine, she had foot & leg pain first, and that it will just take more time for the spine to heal as well.

      I’ve gone from being hopeful & optimistic to being scared & nervous.

      Thanks,
      Kelly[/QUOTE]
      I have had CIDP for about 4yrs.TheDrs did not know what I had and I had to di MYself .I did this by research on the internet.
      I recall that spinal caps are not always reliable indicatore .I also recall thatIf Immune globulin brings relief you have CIDP PERIOD.You must take 5 days consecutive IV for a proper test.Good luck.