June 1, 2007 at 2:31 pm
sorry no info
AnonymousJune 1, 2007 at 3:25 pm
you said ‘I was wondering if there would be a change in a ncv/emg test during a gbs residual flare up (two week flare up) on third week, test was taken?’ I BELIEVE THE ANSWERED LAY, IN PART, FROM WHAT YOUR NEURO SAID LATER ON IN YOUR POST. IN EFFECT RESIDUALS DON’T REGISTER ON A NCV. I BASE THIS ALSO ON THE FACT THAT THAT IS ONE OF THE WAYS WE’VE ALWAY SAID HERE TO TELL THE DIFFERENCE BETWEEN A REAL ATTACK & YOUR RESISUALS ACTING UP. IT WOULD BE GREAT IF DOC DAVID SAW THIS & CONFIRMED. I DON’T KNOW IF ACTUAL STRENGTH DECREASES, BUT THE FATIGUE CAN BECOME SO GREAT IT CAN FEEL THAT WAY.
take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousJune 1, 2007 at 3:36 pm
Emily has active CIDP. We know this because she has inflammation along her spine. She’s had 3 EMG’s. The last 2 were 2 months apart. There was slight improvement even with decreasing her IVIG frequency. She has slowed nerve conduction with minimal demyelination. (The conduction was at 24 in Nov 06 & 26 in Jan 07. Anything under 29 is indicative of CIDP)
She is at about 100% physically but she still has to receive IVIG to remain there. People can’t tell that she has anything wrong with her. She’s just as active & healthy looking as every other kid is.
IVIG isn’t going to improve an EMG. IVIG stops the CIDP anti-bodies from attacking your nerves so they repair. Having IVIG 28 days before an EMG really shouldn’t change the results. I don’t think that the nerves are going to repair any significant amount in that time.
The Dr at the MDA, who we saw for a few months, said that she likes to do an EMG every 2 months. I, personally, feel that is ridiculous to do to a child but she says that is the norm.
If Kevin were my child I would have the EMG, the IVIG and I would also ask for a spinal tap & MRI’s of the brain and spine. The only way to figure out what is going on is to have a complete workup done all at the same time. You need all the pieces of the puzzle to see what is really going on. With so much uncertainty surrounding his dx, I would just go ahead, do it all & see what the results are. I would also schedule him with an Immunologist to test for any genetic disorders that are similar to CIDP.
June 1, 2007 at 9:29 pm
I was just wondering if there is any connection between the fact that his very first ivig was the same as his secong with only one round of ivig five and a half months prior. Gene, thats what I am trying to say, if there was no change in the ncv 5 1/2 months later WITH SYMPTOMS, it must be gbs, otherwise an active cidp bout would have shown up at that 5 1/2 month time frame. Correct?
Gene, you confirmed what I asked, you can have loss of stregnth with gbs flare up, that is why with the ncv showing no change, it is not accurate for the doctor to make the judgement of continued ivig solely on a non diagnostic clinical “squeeze” test. Other areas of endurance and fatigue had miraculously disappeared right before we had the March ivig (flare up was over?) his inability to have resistance on the hand fanned out neuro assesment is what he based the decision on, in my opinion, ignoring the actual diagnostic tool (ncv/emg)
Kelly, what would an mri tell us? We did have one of the brain and it was normal, what exactly would an mri tell us re cidp/ gbs? If Kevie continues to have pain on his spine in the l/p area from the previous botched l/p, I was actually contemplating asking for an mri. I wonder if an mri would indicate any damage from the previous l/p?
If there were no symptoms of a gbs flare up or cidp activity, I can’t imagine that the doctor would do an l/p?
If someone had cidp, would the l/p always show an elevation? I was told that ivig would make the l/p results inaccurate, kind of like having antibiotics and getting blood work? Is this true?
This week I am going to try to figure out how to put a picture on here so you guys can see the sweet little boy you are helping!
Thanks guys and gals Dawn Kevies mom 😮
AnonymousJune 1, 2007 at 11:45 pm
I am certainly no doctor, not even an expert on CIDP, but I have been reading your posts for quite some time. If I get it right, the question is whether he had GBS & made a good recovery (with residuals acting up when he overdoes it perhaps?) Or could he have CIDP, thus the need for continued IVIG & more EMGs. Now we are talking about a child here, one who apparently went over 5 months with no major symptoms after his first IVIG?
Having raised a son with severe spina bifida, I hate the thought of any unnecessary precedures being done, especially on a child. I can’t tell you how many experimental procedures & surgeries I said no to while my son was growing up, & at age 26 he is so grateful. My thoughts are much like yours, let your son be a normal boy unless he begins a serious decline in his strength & stamina. If he truly does have CIDP then IVIG can be given at that time. But if he had only GBS, then he will probably be just fine as long as he rests enough for a full recovery.
I did not post this lightly, I have wanted to respond to your idea for some time. I can’t bear the thought of a child having a lumbar puncture & EMG if it isn’t absolutely necessary. I had 3 of each & they were not pleasant. Sometimes as a parent we have to be a strong advocate for our children; also we are the ones who live with them on a daily basis. No matter what this neuro wants, you are still his guardian.
AnonymousJune 1, 2007 at 11:48 pm
An MRI would show any inflammation along his spine. This would be an indicator of active CIDP.
Emily had her last LP in November while NOT in a relapse. The dr wanted to see how her protein levels were compared to the LP done in March of 06. Her protein was within normal range but she still has active CIDP which was confirmed by the inflammation on the MRI & the slowed nerve conduction.
The LP done in March 06 was done about 2 months after her last IVIG treatment after her original dx of GBS. It was higher than the previous one done in Dec 05.
I don’t think that IVIG would really tamper with the results. I’m not 100% sure on that though. The neuro was actually hopeful that Emi had gone into remission when she got the LP results but later that day we got the MRI results which indicated it was still active.
June 1, 2007 at 11:58 pm
Thanks Kelly, I think I will ask for the mri, and maybe those results could tell us about his pain as well, as to it being inflamation via cidp or something else all together (botched l/p, herniation, whatever) I think I probably will take a pass on the additional l/p since the last one did not go so well. We already had the first one w/ positive elevation and the additional ncv/emg and mri as well as symptoms should be sufficient, I hope! Thanks Dawn
AnonymousJune 6, 2007 at 1:55 pm
I also agree with Pam. If Kevin didn’t react so badly to the IVIG, I’d say what’s the harm. But if he’s nearly 100% now, why put him through it? Also I would definitely avoid another LP, and I don’t really understand all the repeated EMG/NCV studies (I only had one EMG/NCV for diagnostic purposes — my clinical improvement (strength, reflexes) are what are showing progress for me). As for the MRI, it could show if there was some real damage done by the LP vs some “bruising” that will heal itself, but as to diagnosing CIDP, my MRI was normal, so I wouldn’t necessarily do it for that reason.
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