Hello! I am a mother of a 13 year old who was diagnosed with GB this past June(2014). Her MRI showed enhancement of nerve roots when she was admitted to the hospital. This past week (3 months later), her MRIs show minimal improvement. She is feeling a lot better, so I expected a much better MRI result (both for brain and spine). I am wondering: how many of you guys were asked to do an MRI as part of the original diagnosis? Were you asked to do a follow up (and when)? Did your follow up show all that all enhancements were gone? Her doctor is not returning my call, and I am wondering if these results can happen, or if they are not good. Thank you very much for your input!
I didn't know that an MRI could show enhancement of nerve roots. When they did my MRIs, they said they were looking for lesions to make sure that I did not have MS. As I got worse over the weeks, they repeated my MRIs to see if I showed any lesions for MS then. I had 6 MRIs (Brain, Neck, Spine, Orbital) and no MS. I will ask about this when I go for my neurology follow-up. My attack occurred this past June, as well. How bad was her GB? I hope she is continuing to feel better!
I had an MRI but it was just to rule out what the doctor "thought " it might be, the real test to diagnose GBS is a spinal tap which they do only if they strongly suspect GBS. This test will show the amount of protein in the spinal fluid. After leaving the hospital while I was still on a cane, I had an EMG and a nerve conduction study to see how much damage was done. You may want to strongly suggest these tests be administered to your 13 year old to see where you truly are in the healing process. Best of luck.
Hi CSil,
My son had GBS last year at 18. They only did the MRI while he was still in the hospital, and they said that was to rule out other things. When they wanted to measure the nerve damage, they did EMG/nerve conduction studies, where they poked him with needles and measured the nerve response. That was not a pleasant experience, but not nearly as bad as the pain he had while he was really sick, and it gave us a good idea where he was in recovery. I am glad your daughter is feeling better.
Toni said:
I had an MRI but it was just to rule out what the doctor "thought " it might be, the real test to diagnose GBS is a spinal tap which they do only if they strongly suspect GBS. This test will show the amount of protein in the spinal fluid. After leaving the hospital while I was still on a cane, I had an EMG and a nerve conduction study to see how much damage was done. You may want to strongly suggest these tests be administered to your 13 year old to see where you truly are in the healing process. Best of luck.
Thank you so much for your replies. She did have a Lumbar Puncture, which showed increase protein. She had 2 days of IVIG and has been feeling a bit better each day. She is back in school, so that is really great. WHen she was admitted in June, her MRIs showed neve root enhancement and involvement of 5 cranial nerves. They said that the results were "consistent with Guillain Barre Syndrome". No one has mentioned anything about MS so far. The doctor expected for her MRI to show a lot of improvement, but the improvement was minimal. I was wondering how often you guys have seen cranial involvement, or nerve root enhancement in GBS. Also, if you had a follow up MRI, when did these enhancement resolve? As I understand, these enhancements are common with GBS, but from reading your replies, it sounds like you did not show any enhancement, correct? Thank you again!
Hi CSil,
The original MRI was done at the hospital where he was initially treated. I do not know if it showed any enhancement, or what that would mean. The hospital never said anything about it except they wanted to rule out other things. They did not tell us what it showed, what they expected it to show, etc., so I cannot help you there. They diagnosed the GBS only after he was completely paralyzed and could not breathe on his own - so I would honestly not have believed anything they told me anyway.
Since the local hospital screwed up so many things - including giving us multiple other diagnoses before figuring out the GBS - we began consulting with the state university hospital neurology department while he was in ICU. At least those doctors had actually treated GBS patients, including young patients with Miller-Fisher like my son. The university team has been great, and they never indicated that he should have any more MRI's even though he also had cranial involvement (his brain could not even regulate his heart rate, blood pressure, respiration, swallowing, etc.). Instead, they have focused on the actual nerve tests. So at least in my son's case, I do not believe any more MRIs have been necessary. Maybe you could ask the doctor exactly what the enhancements mean and why he is doing this test instead of nerves studies?
CSil said:
Thank you so much for your replies. She did have a Lumbar Puncture, which showed increase protein. She had 2 days of IVIG and has been feeling a bit better each day. She is back in school, so that is really great. WHen she was admitted in June, her MRIs showed neve root enhancement and involvement of 5 cranial nerves. They said that the results were "consistent with Guillain Barre Syndrome". No one has mentioned anything about MS so far. The doctor expected for her MRI to show a lot of improvement, but the improvement was minimal. I was wondering how often you guys have seen cranial involvement, or nerve root enhancement in GBS. Also, if you had a follow up MRI, when did these enhancement resolve? As I understand, these enhancements are common with GBS, but from reading your replies, it sounds like you did not show any enhancement, correct? Thank you again!