AnonymousMarch 25, 2008 at 1:09 pm
Hello, I have a question about the peripheral neves…
I was dx on 11.19.07 with GBS. Since then I have had an EMG test in which my neuro stated I have no peripheral nerve damage. I thought that was great, however he was not so happy. He explained to me that if you have GBS you have some type or degree of peripheral nerve damage. I have been going for MRI’s to look for MS, so far so good nothing has shown up. My Neuro keeps telling me I have GBS don’t worry about, but also keeps saying you can’t have GBS without peripheral nerve damage. So I guess I should’nt ask him if I have cancer, because he will say yes, even though you don’t have it. I’m trying not to kill the guy, but I think he is afraid to say he doesn’t know what I have.
Has anyone else had this type of situation in relation to not having any peripheral nerve damage in relation to GBS.
Between you and me I want GBS instead of MS, sorry to those who know someone who has MS.
I already have a new Neuro lined up, so it might be bye bye time for my neuro.
AnonymousMarch 25, 2008 at 4:15 pm
I can understand your frustration! Try hold off on murder until you get a satisfactory answer, not sure what prison medical will be like :rolleyes: .
I have gone back to quickly go through your other posts, and do see that you had a spinal tap which, from what read, was positive. I have also just read through the latest book by Ds. Parry and Steinberg to try and find out if there could be some explanation – because when i read that the EMG showed no peripheral nerve damage, it sounded as if there was some catch i.e. sometimes spinal’s give negative results so would it be possible that EMG’s dont show true results? or that in rare cases the axon/myelin etc. are so quick to heal that it doesnt show up on tests (which would be unusual cause they do take quite a long time).
When did you have you EMG? Reason for asking is because they say that abnormal electical activity does not appear immediately after the onset of GBS and will not show if the test is performed early – by the way your post is worded, it seems as if you have only recently had the EMG, which will not explain the results. I am going to type an exert from the book, but im not sure how much help it will be to you, but its worth a try.
This is from a section headed Electromyography (EMG) (page 48-49)
There will be abnormal electrical activity in the relaxed muscle when there has been damage to the nerve fibers that supply the muscle. …..called fibrillation. This activity does not appear immediately after the onset of GBS, and will not show on an electromyogram performed early. This is why the people suspected of having GBS are often asked to return tot he EMG laboratory for a second study a few weeks after the initial study. Some research studies have shown that the prognosis of GBS is related to fibrialtion – in other words, the more fibrillation, the less of a recovery, but this is not a consistant finding. The pattern of activation recorded during gentle voluntary contraction of the muscle can provide further information regarding the severity of degredation of the axons.
There are a few caveats about studing people with suspected GBS. Early in the disorder, only some nerves may have sufficient damage to be detected with electrical testing. Therefore, when GBS is suspected, it is prudent to study multiple nerves, expecially in areas that are clinically abnormal, so as to not miss abnormalities that will help confirm the suspected diagnosis. If only one nerve is studied and found to have only one abnormality, one might be suspicious of GBS, but still be skeptical without finding other NCV abnormalities typical of GBS in that nerve or in other nerves. It is therefore prudent to study other nerves and nerves in other limbs to look for additional abnormalities, such as slowed conduction velocity or prolonged distal latencies, which indicate widespread demyelination that more strongly supports a diagnosis of GBS. The most imporotant diagnostic feature in the electrophysiologic studies is demonstration of the characteristic evolution of the canges, not necessarily the static changes seen during one study. This, if the diagnosis is uncertain, the studies may need to be repeated.
Im not sure that helps much at all, but it does explain a little as to possibly why there could be some absence of activity if the test wasnt done in greater ‘detail’.
AnonymousMarch 25, 2008 at 6:10 pm
I have CIDP but during my first bad attack about 6 years ago now, I had a EMG done and I was told it was okay – Which really confused me as I could hardly walk and I can remember not even feeling the needles in my leg when I was having the test! Then a couple of years later, when I had a Nerve conduction velocity test – it showed up damage consistant with CIDP. I was actually feeling much better (compared to how I was feeling during the first attack) by then!
I also have absent reflexes.
What Ali posted might apply to me – that damage doesn’t show immediately during an attack. I didn’t know that and never had a follow up test a few weeks later.
Best of luck with a diagnosis,
AnonymousMarch 25, 2008 at 9:07 pm
Ali, I have had 2 EMG’s, one while in the ICU, and the second two months after I was DX with GBS. Neither showed signs of peripheral nerve damage. I still have problems although not that extreme, ie. hot/cold sensitivities, fatigue, loss of balance, blurred vision from time to time. It all sounds like a problem with my peripheral nerves according to what I have read. I want to agree with my Neuro that it is GBS, but he keeps saying no matter what point you are in the healing process you would show signs of nerve damage, even if you were completely healed. So I am a little concerned that there might be something else lurking around in my body. Oh ya, when I had my spinal done, in the hospital, the Neuro said I had the protein present that would signal GBS. However he said it was a very low level. Well, I should have my MRI results back in a few days, so I’ll post then what news I get. Lets hope I don’t have to leave this site for the MS site.
AnonymousMarch 26, 2008 at 8:02 pm
The NIH in 2005 stated that there are nearly 100 known autoimmune diseases – afflicting 23.5 million people in the US – one in twelve Americans. Many of theses diseases have doubled and tripled in Western countries throughout the world in the last 40 years. So….whether it be GBS, MS, CIDP – the body is attacking itself. We need to rethink the food, water, chemicals that we put into our bodies. AND try to eliminate stress. The doctors have no idea what causes it or it wouldn’t be labeled SYNDROME.
I had a brilliant doctor the first time I got GBS. To quibble about you not following the textbook symptoms, is ludicrous. If they look at the list of the possible causes – being sprayed with bug spray, immunizations, flu bug days or weeks before, – mine was stress and that isn’t on the list. Just be thrilled that you have no nerve damage and don’t look for trouble! ENjoy the news.Tune out the doctor when he turns negative. IF they kept their patients healthy, they wouldn’t have any patients and who would pay for their Mercedes? (wink)
I stopped going to doctors. The last doctor I went to and told him my GBS was returning (after 20 years) barely raised an eye brow and did nothing. They are only practicing medicine. And I say this with experience – the dermatologist who told me I had FLEAS – when I found out later on by asking a nurse – it was shingles. Fifthy bucks and an hour drive to find out that fleas are smart enough to come back each day and bit me (hives) in a distinct pattern. Give me a break. So, Sean, take the positive and find out what in your life you can change to support your body. Your body is the smart one – treat it nicely.
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