Who is having these symptoms

Trish,

If those are your symptoms, sounds like you need to see a doctor. If you start feeling your limbs becoming weak and tingling and paralysed, go to the ER.

Feel better soon!

Shannon

Hi,

The biopsy, and one off treatments of IVIG spread apart as you describe, are not protocol proceedures for GBS. They certainly are for CIDP, and I hope you may have heard about that too from his doctors by now. If not, ask them about it. Try asking this question on that forum.

trish, if your son still has all those symptoms, i would take him to the er and let them decide whether to treat or run more tests. you have to stand up for your son, don’t take maybe or might as answers to your questions. your son’s health needs to come first and only you can make that happen. keep coming back here with any questions you might have. i’m sure somebody will have answers for you. take care of your son and yourself.

I’m no expert on this but from what I learned after being diagnosed with GBS and going through both IVIG and PLEX it sounds like the two main tests for positive diagnosis are the spinal tap and EMG (and of course they check blood and urine for about a hundred other things to rule out and in my case CT scans, MRIs and X-Rays as well). I had my first spinal tap done the day I was admitted the the hospital, my second done two days later and my third done a week after that. Once I lost my reflexes they were anxious to get the results of the spinal tap (white blood cells and protein levels) and the EMG back to help ensure they had a correct diagnosis. My EMG was done after I completed IVIG as I got worse after that course of treatment but from what I understand usually IVIG for treating GBS is 5 consecutive days (like in my case) or over the course of 7 days being done on days 1-2-3-5-7 (or something similar to that).

Might want to get some more explination from the doctor or a second opinion if they are diagnosing with GBS. I am assuming you are seeing a Neurologist already, if not I was ask for a referal to see one.

If he’s getting IVIG every six weeks, they may suspect CIDP as the culprit. Like the others before me have suggested, this doesn’t tend to be the normal protocol for treating GBS. Not to frighten you, but did they test for West Nile Virus? I only ask that because a 10-year-old child was recently diagnosed with it in my area, and, from what I’ve read, the treatment for GBS could be detrimental for someone with West Nile Virus. Again, I only mention this because it’s been on my mind because of the recent case near me.

I hope your son feels better soon!

Shannon

trish,

ivig only works om abt 70% of us as does plasmapheresis [pp]. if the ivig shows no slowing of the destruction, then pp maybe should be tried. take care. be well.

gene gbs 8-99
in numbers there is strength

Like [i]gene[/i] mentioned about IVIG not working on everyone… I had undergone IVIG and got worse after completing the treatment. They then did a course of PLEX which in my case did work. You may want to ask the doctors about their thoughts on PLEX if they havent brought it up yet and continue on repeated IVIG treatments.

doby,

i am not familiar w plex. can you enlighten me? thx. take care. be well.

gene gbs 8-99
in numbers there is strength

Sorry, both hospitals I was at used that term so I assumed that it was a common term used but apparently I was mistaken. PLEX is PLasma EXchange, it is the same thing as PP or Plasmapheresis.