- This topic has 10 replies, 9 voices, and was last updated 14 years, 11 months ago by Anonymous.
June 1, 2006 at 10:34 am #2889AnonymousGuest
I think that Emily is having a relapse while on IVIG. I posted before that her right eye became paralyzed again & now she’s complaining of leg pain. Her legs only hurt when she is relapsing.
The neurologist wants to do an EMG. When Emi was in the hospital they decided not to do one because they are painful & there was no need.
Is it necessary to find out what is going on? Also what should I expect to happen? Is it really painful?
The EMG is tenitively scheduled for June 23rd with the pediatric physiologist. The neurologist wants it done sooner though.
I spoke with the neurologist this morning and he wants to increase the IVIG to 3 times a week again. He is against giving Emily oral prednisone. I asked him about it yesterday, at Emi’s appointment, and he was shocked that I would even suggest it. His response was “Do you know what that does to people?”. Didn’t help my anxiety about it at all.
I know I’ve been asking alot of questions lately. I just wanted to tell you all how much I appreciate the answers & responses that I’ve gotten. I’m just trying to understand this disease.
June 1, 2006 at 11:01 am #12263AnonymousInactive
Kelly, making these kind of decisions for a child must be terribly difficult for you. EMG tells the neurologist what is going on with the nerves, if there is damage to the myelin or to the axions too, also how extensive it is. Is it necessary? Only the neurologist can tell you that. I didn’t question my neurologist at all. I wanted to find out what was going on. I wanted to stop the progression of symptoms, I wanted to get better. Well, it hasn’t happened. Additional bloodtests showed that I have a CIDP variant that doesn’t respond well to IVIG, Plasma exchange or Prednisone. The one treatment that might help, Rituxan, I have not been able to get because it is not approved for CIDP by the FDA and insurance companies and I have not found a doctor yet willing to fight for me.
An EMG is not pleasant at all. Getting electrical shocks is not like other pain, though. It’s hard to explain if you never got shocked by elecricity before. One good thing, the shocks are quick, only a second or so if I remember correctly. Try to find a way to help her relax. It will be less uncomfortable that way.
When I got on Prednisone a few weeks ago, I had a bad reaction after two weeks. I was having shocklike waves going up my legs all the way to my chest and lost control over the legs, my knees were collapsing. This happened many times during the day. I had to get a walker to avoid falling. The neurologist took me off again and the problems disappeared. My reaction probably is not that common. Different people react differently. But there are a number of other side effects that shouldn’t be taken lightly. You can look it up on the internet.
June 1, 2006 at 11:59 am #12266AnonymousInactive
kelly, the emg test is like getting stuck with a really fine needle, it measures the muscle reaction to nerve stim. they poke a fine needle probe into the muscle and listen to the muscle responde to a nerve, the muscle is used with the probe in it measuring the response. it might be alittle sore for a couple days with the possibility of a bruise showing up. this test is usually done at the same time a ncv test is performed. the ncv is like getting a shock, it doesn’t hurt, just might be uncomfortable for a second. it measures the time it takes for a nerve to responde to an electrical stimuli. it can determine if there is myelin sheath damage or axon damage. there is a good link posted under spinal taps that might explain it better, badmommy posted it. go to electrodiagnostic and it will tell you what the tests are for and what to expect. i hope emily is feeling better soon.
June 1, 2006 at 12:57 pm #12270AnonymousInactive
Angel is correct. The emg consists of several sticks with needles, which im sure is going to be quite traumatizing for a child. A neurologist that has experience with children is a big plus in this situation. If it were my child I would insist on something to relax the child, maybe even put her to sleep. The necessity thing is a good question. Most insurance companies want proof before shelling out the money for ivig. If there is a shadow of doubt to her diagnosis the emg will help narrow it down. My opinion, for what its worth, let them do it…BUT make sure your child is comfortable or asleep. The pain for me was not that bad, but I can picture my son who is afraid of needles going through that. My heart is with your daughter and you.
June 1, 2006 at 1:08 pm #12272AnonymousInactive
The reason he doesn’t want togive Emily prednisone is because it thins out the bones and it can cause major problems in a young child. Many people have had to have hip replacements because of the prednisone.
It is a great medicine but the damage it can cause is incredible.
June 1, 2006 at 1:47 pm #12274AnonymousInactive
An EMG measures the strength of nerve stimulation to the muscles, an NCV (Nerve Conduction Velocity study) measures the speed at which the signals travel along the nerves and is used to determing the amount of demyelination. Often both these diagnostic tests are done together, the NCV is less invasive as no needles are stuck into the skin and muscles, it is done with little pads that are placed on top of the skin and then the current is run through to the pads. I have been told that in the case of GBS/CIDP an NCV is more helpful as it is the demyelination of the nerves that is the root of the illness and that in turn effects the transmission of the nerves to the muscles, the NCV study then gives the neurologist a “blueprint” of where the damage is in the patient. I have had both (more than once) and though neither was very comfortable (an understatement) the NCV for myself anyways, wasn’t as hard to handle…..perhaps you may want to ask Emily’s neuro if it is neccessary to do both tests or just the NCV??
my very best wishes to you,
p.s// here is some info on NCV: [B][U]Nerve conduction velocity[/U][/B]
“Nerve conduction velocity (NCV) is a test of the speed of conduction of impulses through a nerve.
[B][U]How the test is performed [/U][/B]
The nerve is stimulated, usually with surface electrodes, which are patch-like electrodes (similar to those used for ECG) placed on the skin over the nerve at various locations. One electrode stimulates the nerve with a very mild electrical impulse.
The resulting electrical activity is recorded by the other electrodes. The distance between electrodes and the time it takes for electrical impulses to travel between electrodes are used to calculate the nerve conduction velocity.
Electromyography is often done at the same time as the NCV test.”
the full article can be viewed at: [url]http://www.nlm.nih.gov/medlineplus/ency/article/003927.htm[/url]
June 1, 2006 at 5:20 pm #12288AnonymousGuest
The dr’s office just called and they have scheduled the EMG for tomorrow at noon. They didn’t say anything about giving her something to calm her. I’m going to call them in the morning to see if that is possible.
I don’t think they are doing the test because of the insurance. They’ve covered everything so far without a problem & Emi has had ALOT of IVIG.
I am very nervous about this. I haven’t told Emi, I’ll tell her in the morning. No need to get her worried over it.
The home care nurse suggested putting Emi on 30g of IVIG once a week instead of 20g every other week. (we just had our last once a week IVIG today & supposed to be moving to once every other week for 3 doses)
I hope I’m doing the right thing. This is just so hard…
Thanks for all of the advice.
June 1, 2006 at 9:19 pm #12309AnonymousInactive
Your doing what you think is best for her so of course it is the right thing. You have asked lots of questions and learned alot about what is going on, your doing everything you can. Good luck with everything tomorrow. Talk to you soon.
June 3, 2006 at 8:10 am #12397AnonymousInactive
How did the emg work out for your daughter? Wow, there must have been some anxiety going on for both you and your daughter. I happen to tolerate emg’s quite well but I realize that it can be quite tough for some folks and for a young child it must really difficult on both the child and the parent.
Anxious to hear how it went for both your daughter and you.
June 4, 2006 at 12:59 am #12448AnonymousInactive
Maybe they are hoping that there will be some improvement from the last EMG, or if this is the first one, they could be looking for a baseline. Personally I don’t think you would see much change over a short period like a couple of maoths apart, but a couple of years apart could be valuable.
I hope all went well with her tests.
June 4, 2006 at 12:09 pm #12470AnonymousGuest
Emily had the EMG on Friday afternoon. It was ummm…difficult. She screamed the whole time but she didn’t fight too much. She said that it hurt really, really bad. (her exact words)
I won’t have the results until Monday morning. The dr did ask if she has more problems on the right side. I’m not sure what that means though.
Emily has never had an EMG. It was suggested in the hospital but the Pediatric Physiologist refused to do it on her at that time. He said that she had been through enough. He was the dr that did it on Friday though & he was very compassionate. He even hugged me when it was over.
I was told that the EMG would take about 20 minutes but he had it done it about 7 minutes. He felt horrible that it was hurting her so badly so he went really fast, which I was very glad for.
The neurologist called me late Thursday night and wants Emily to be on IVIG every other day again for 2 weeks. Emi had a treatment on Thursday but the home care nurse is not going to be available until Monday to come back. Then we will do infusions M,W & F.
After Emi’s infusion on Thursday she was running around & jumping like crazy. It definetly helped with the pain. I’m hoping that we can get her eye fixed again & figure out how to maintain that.
Thanks again for all of your help.
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