how is axonal vs regular GBS determined?
AnonymousSeptember 19, 2007 at 12:57 pm
Does anyone know how it can be determined whether damage is axonal?
Though we were initially told by neuro that our daughter’s case looked axonal, we were later told EMG/ncv ruled it out. Now as time has gone by, recovery seems very consistent w/ axonal damge…could the tests be wrong? I guess it doesn’t really matter but it would be nice to know.
I am feeling frustrated today due to the slow progress she is making. She is working hard at PT but can’t yet walk. Has made great advances but…everybody kept saying she’d be better ‘anytime’, and she is not (by everybody, I mean most of the medical professionals we have dealt with, not you all!)
I try to focus on the positives and be grateful for them but some days it is hard.
AnonymousSeptember 19, 2007 at 3:44 pm
I have axonal damage in my feet from CIDP. It was determined by tests that
the neurologist had done. The damage is permanent, unless science can find
a solution to repair it. I have no pain, no tingle, no feeling, no sensations in
my feet. My neurologist said I probably would never walk on my own again
without aid. I can stand for a few minutes, but have no capacity to pick up
my feet…I use my AFO’s.
I guess that I am lucky that there isn’t any pain or discomfort as most people
have, using alot of meds..I only use IVIG and lots of vitamin/mineral pills. I
don’t have any depression, weight or appetite issues…I just can’t walk.
Physical therapy helps, but I would need to do it the rest of my life…faithfully
and sometimes, it bores me to death.
I hope this helps
AnonymousSeptember 19, 2007 at 4:16 pm
As a matter of fact axonal damage CAN regenerate or I’m more of a freak of medicine than I think! In April 2006 I had surgery to “free” a trapped peroneal nerve. Apparently scar tissue had trapped it, grinding it against the bone, it was almost severed in two. My orthopedist said there was lots of axonal damage but it grew back. Of course then I ended up with CIDP but hey, at least I don’t have axonal damage from that!
I’m trying to stretch my brain and remember back that far but there was something in the NCV/EMG test that told that neuro there was axonal damage. I can’t remember what it was now though. 🙁
If I do remember I’ll come back and post…
AnonymousSeptember 19, 2007 at 4:33 pm
That’s wonderful news…I was told by my neurologist that there are tumor-like
adhesions that run along the actual axonal nerve that prevent the communi-
cation from your brain to the nerve receptors. To find them would be a major
task, as they are so small and the nerve is like a runner of minute strings.
It wouldn’t be feasible to do that kind of surgery because sometimes it can
be under the myelin sheath.
I’ve had this for 11 years, you would think that there would have been some
progress, but, it has been going down, from picking up my foot, to sitting in a
wheelchair. Maybe this is my fate…I can’t worry about it…if it’s meant to
heal, hopefully it will…but 11 years is a long time. 🙂
AnonymousSeptember 19, 2007 at 7:37 pm
axonal damage can vary from very slo recovery to minimum/no recovery & only time will tell. the emg/ncv, although one of the better tests we have, is not bulletproof. if done, the ncv records the f & m waves. this can determine what is axonal. if anyone wants a more technical, longer explanation, pls ask. gbs stands for Get Better Slowly & no one knows how long that is. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousSeptember 20, 2007 at 12:33 am
The ncv/emg can give the dr a clue, but it is also in the interpretation of the test that will tell the most. The tests need to be done the same way for both tests as the first test was done. Otherwise it can be interpreted differently. Does that make sense? I know what I want to say, its just hard to get my fingers and mind to work together to get it out.:rolleyes:
I was told I had axonal damage after my first emg/ncv, then I was told something completely different on my 2nd and 3rd etc. I can walk, and there are times when I have pain(like now) and times when I am just too weak to walk(relapses). I think it really has alot to do with the treatment that is received in the early stages that can have an effect on the amount of damage and maybe the extent of damage to the different parts of the nerves. I wasn’t treated until my 2nd relapse, then it caused aseptic menigitis-but I walked within a week of the start.
I am still Praying for Your Daughter recovery, Never give up!
AnonymousSeptember 20, 2007 at 11:08 am
My daughter had 2 emg/ncv tests. They were done by different docs. The first one was done by a doc who was not a neurologist. The second was by a neurologist, but I don’t think she had the first test to compare to. We did the 2nd test at my insistence when she was not improving at the rate they thought she would.
I just wondered if the results are really that subjective/subtle. Her neurologist (who was not the one who ran EITHER test) said the 2nd test didn’t show axonal damage, which we were relieved to hear. But now I am wondering if the neuro who did the 2nd test may not have measured the right places/nerves?
I really don’t want to put her through another test. She is slooooowly improving. But I just wonder, is it possible the test didn’t show everything? The neurologist seemed very dismissive of my suggestion that perhaps the test couldn’t measure everything, or might have missed something.
We have ruled out a number of other things, including the suggestion (by the neuro, upon being asked if the test was looking good, why wasn’t she getting better any faster) that ‘stress’ might be delaying her recovery. Or school avoidance. However, she went back to school as soon as she was able and never resisted going (quite the opposite!) She saw a psych to be sure she was coping well, the psych said she is fine & mentally resilient and that she doesn’t think the delay in recovery is due to any mind-related factor. In fact, she thinks she has a great attitude. So if it is not stress/mental, and the emg/ncv shows that she ‘should’ be further in her recovery, what is it?
It is frustrating, is what it is! I think it bothers me more than my daughter, the ‘not knowing’ exactly what is going on with her body. She is very sure she will get better and takes one day at a time. I try…
Thanks Gene , Julie, Angel and Miami Girl for your input. Let me know if you have any other thoughts at all.
September 20, 2007 at 11:55 am
Kevie has had three ncv/emg. The first by one doc who gave the cmt dx., when in actuality it was gbs. Spinal confirmed it, the ncv/emg looks pretty much the same for gbs and cmt, only spinal r/o out. Anyway, our second ncv/emg was done in March by another doc, I brought the old test report and this doc replicated the same nerves and measurements, as well in July, the same doc did antoher test exactly the same. So we have three identical tests, by two docs. I was told that axonal damage is visible by ncv/emg. I believe you mentioned the first doc said there was, second said no. One of two deductions, either the same nerves were not tested each time or they are repairing. We were told nerves do not repair from axonal damage, but it seems as though nothing with gbs is ever textbook. Is it possible to get the original report and have your neuro review it and check to see if any of the same nerves were tested? Would you consider having another test in a few months if you feel progress is not being made, sort of as a gauge to at the very least make sure there is no worsening? If so, maybe at that time the same doc could replicate the test he just did as well, test some of the nerves that the first doc did and said there was axonal damage on those. Then you would surely have definitive proof either way.
I am so sorry progress is not happening at the pace you were hoping for! We will pray that good things start happening, SOON! Call me! I lost your number, I would love to talk!
Love, Dawn Kevies mom
AnonymousSeptember 20, 2007 at 7:02 pm
According to my Hopkins Neurologist it makes a big difference in who interprets the test and what they are looking for. He mentioned several times that the person who tested me in the hospital was looking for something else and therefore didn’t interpret the tests correctly. That’s why we drove 2 hours to get it done at their clinic because he wanted to be the one to interpret the test results rather than have someone local do it.
AnonymousSeptember 23, 2007 at 12:33 am
Hi Cincymom: There is a difference beteen axonal damage and axonal GBS, which is a rare variant. Axonal GBS occurs, as I understand, when there is little or no myelinin damage but there is axonal damage. But GBS which causes paralysis usually causes some axonal damage. Axonal damage takes longer to heal , but how quickly and how much differs with each individual. My myelin healed quickly but the axons have healed very little so I must still use a wheelchair though I can walk short distances. Generally speaking the more axonal damage the longer the time for healing and the more disturbing some residuals can be. I decided not to get another nerve conduction test as well because it changes nothing. The best thing one can do is work with what is and get as much rest as possible. Good luck to you both. Jeff
You must be logged in to reply to this topic.