More tests for Emily

    • Anonymous
      November 13, 2006 at 5:36 pm

      We changed neurologists & the new one wants to redo ALL of the tests (brain & spinal MRI, spinal tap & another EMG). A few weeks ago Emily tried to sit through the EMG but couldn’t stay still long enough for the 2nd part of the test (with the probe). So the neurologist decided that she wants to do that part while Emily is sedated.

      The neurologist said that there are some inconsistencies with Emi’s last MRI’s and her diagnosis. She was originally dx’d with GBS/MF but that was changed in April after having a relapse & an EMG showing demyelination. Apparently the last brain MRI shows inflammation of the 7th cranial nerve & not the 6th but Emily still has eye issues. Also there is some inflammation along her spine that isn’t consistent with CIDP.

      I don’t want to continue to put her through this. As it is we have to do these new tests in 2 rounds. We’ll do the brain MRI & spinal tap next Wednesday. Then on Friday of the following week we have to go back to do the spinal MRI & EMG. The reason is because they won’t be able to keep Emily out for that long with the anesthesia that they will be using.

      How often do others have these tests done? Has anyone else had inflammation on the spine?


    • Anonymous
      November 13, 2006 at 6:23 pm


      Sorry to hear that Emi will need more tests.

      I have had 6 EMG’s. This was because it took 3 months and 6 different neurologists to get a diagnosis.

      I know you hate to have her go through this again, but you do need to know a definite diagnosis. If you have never had an EMG, it’s actually not terribly painful. It sounds like it would be, but actually, it’s not bad. I know children have a hard time being still for something uncomfortable, so sedating her is probably a good idea.

      I don’t know about inflamation of the spine. Maybe someone else here has some knowledge or experience with that.

      Hugs to you and Emi.


    • Anonymous
      November 13, 2006 at 8:19 pm


      My heart goes out to you and Emi! I am at a loss for words knowing she has to do this all over again. Just know that you are so often in my thoughts and prayers!!!!

    • Anonymous
      November 14, 2006 at 9:02 am

      Hi kelly, sooo sorry to hear emily has to go through all that again. i myself don’t see why the lp, but then again i’m not a dr. if her levels were elevated the last time they probably will be again, unless she is better then now then she was then. the mri i can understand, the ncv i don’t, they already know she has demyelination of the nerves. if i remember correctly, if one part of the test shows demy then the other test won’t show anything different, emg shows demy ncv probably won’t show a problem. so why put the sweet pea through it again? unless the previous one was messed up, which is unlikely. my emg was “not bad” according to the dr, but my ncv had a problem. actually i have demy in the lower back-was looking through some old xray reports-prior to my gbs events. i have to bring that to my neuros attention next month. in aug of 05 (my first gbs paralysis event) i had an infection in the spine, it was seen by the tech, but when i asked the neuro about it he said it was nothing, don’t worry about it. in oct 05 i had a bad reaction to ivig and ended up with aseptic menigitis, after that in dec 05 the mri still showed an infection in my spine, again the neuro told me it was nothing to worry about-i still have problems with alot of pain in my back. i’m still having paralysis events, numbness, pins and needles and severe fatigue, my neuro is still on the wall with my dx, but my physio dr says its gbs relapsing/remitting type, he is writing to my pcp, neuro requesting them to look into the infection in the spine, whether they will or not is yet to be seen. i will get the answer next month.
      if emily’s mri shows an infection don’t leave without getting an answer as to what it is, why its there and what to do about it, it might be the answer you are searching for. you both are in my thoughts and prayers. kelly please keep us posted on emily’s progress and results. give emily a big hug for me.

    • Anonymous
      November 14, 2006 at 11:28 am

      Hi Kelly

      Its good that the new neuro is trying to pin down the diagnosis. I would pursue the tests if it were me or my child, because you need the right diagnosis to get the right treatment.

      Best wishes,

    • Anonymous
      November 14, 2006 at 10:33 pm

      I know you hate to see Emily go through all of this testing, but you do want a correct diagnosis so she can get the correct treatment. That is why you found a new neuro. It is vital that you find out what is going on in the spine. There is some reason for the inflamation, and a way to treat it. You are in my prayers sweet thing.
      Mary Ann

    • Anonymous
      November 15, 2006 at 10:45 am

      Thanks everyone…

      I didn’t mean to give the impression that I wasn’t going through with the testing. Of course we are. It’s just that I hate to see her going through all of this again. The kid just can’t catch a break.

      I got the new neuro’s report that she sent to the pediatrician. She says that Emily a form of a relapsing sensorimotor neuropathy with cranial involvment. Whatever that means. She’s also referring us to an immunologist.

      The mold is getting tested this Friday then hopefully we will be out of here ASAP. I’m hoping that the complex will just let us out of our lease & we can go on our way. I doubt it will be that easy though.

      Thanks again.