Are you in Remission, with a normal EMG?
AnonymousDecember 23, 2008 at 12:29 am
Mason had a normal EMG today. He still has the weakness, and pains. His legs still hurt, and he still has bad migranes. The problems are not all the time, but more than twice a week. I want to be happy and positive, but it is just I am not sure. What defines remission?
Thanks for your help! MERRY CHRISTMAS!!!!!!!!!!!!!
AnonymousDecember 23, 2008 at 2:30 am
What is considered a “normal” emg.. Is it relative to a previous emg he has had, or relative to normal emg’s for his age group? I would say that you were told great news, and that he is stable now.. That may or may not mean he is in remission, but probably… I have “residuals” going on but my nerves probably have healed, since pretty much all my reflexes have returned, yet some numbness remains.. I get episodes of fatigue, weakness, dizzy, but I think some is due to ivig/prednisilone…. Considering he is young, I bet he will come out great… All of the preceding is strictly my opinion…. Keep the faith.. deanl…..
AnonymousDecember 23, 2008 at 8:20 am
One of the highly qualified neurologists who spoke at the 2008 symposium said that you are in a remission ONLY when you are off all drugs/medications that are used to control progression and ONLY if you remain stable as the months, years pass. If you came off the drugs and relapsed, you need them, that’s not a remission.
I have been in a remission for about seven years now, stable, no relapses and I have been off all drugs to control my CIDP for five years and remain stable.
BUT, as far as things go for me, I have RESIDUAL DAMAGE, from untreated progresssion during my first two years, that probably will never away. I learned how to “JUST KNOW” and my residuals are not signs of relapse.
AnonymousDecember 23, 2008 at 9:31 am
Hey Trish – a normal EMG means that his nerves have HEALED! They are sending the messages to & from the brain at a NORMAL rate of speed!
It means that the treatments have done their job & controlled the bad CIDP antibodies long enough for the schwann cells to do their job & repair the nerves.
This is very good news!
It doesn’t mean remission though. Remission happens when the body stops making those bad CIDP antibodies. You won’t know if the body has stopped unless you stop all treatments.
If it were me I would keep doing treatments, see if you can space them out or lower the dose (I can’t remember what Mason gets) and see what happens. You won’t know unless you try.
BUT I would wait a little while before you try doing any of this. I would want to wait to give the nerves a little bit more time – just to make sure. I like to make changes during the summer personally.
CONGRATULATIONS! Mason has jumped over a big hurdle.
AnonymousDecember 28, 2008 at 11:13 am
Mason has been getting 24gms of IVIG every three weeks since 8/06, until the end of summer. His last three treatments he started having problems with his veins. His Dr started getting agrivatted and blaming it on Mason for being a bratt. The next treatment was at 6wks, he still could not take the pain from the treatment. He was knocked out for six hrs and they ran the treatment full speed. He then had a bad reaction.
Dr M ordered the EMG, with 200mg of SeroQuel. Mason had a panick attack, he had a reaction to the meds and he could not breathe. We had to reschedule for two weeks later. He was given something to relaxe him. He was never relaxed, and was fighting the whole time. Can you get a true reading while he is fighting? Is there a web sight that tells the numbers for the readings? They did not use the needles, just the shock gun.
Mason is not as hot natured now. He has been getting cold. He is still waking up with leg pains, he is tired real easy. He still cannot walk along time. When you hold his hands they are limp.
His Dr is stopping all the IVIG and steriods. He is just on the meds for the migranes. How do I know his symtoms are healing, and not the CIDP? Dr M said he has seen people curred, and Masons CIDP is gone. Why are the symptoms still there?
AnonymousDecember 28, 2008 at 2:13 pm
Warning: I’m assuming by now you know how I am – I speak my mind & I will definetly be doing so in this post.
With that being said…
GET A NEW DR. NOW!
This dr is a quack! Seriously!
To run an IVIG treatment on a CHILD at full speed is dangerous & in my opinion should be a crime. You are so lucky he didn’t have a heart attack or stroke – I’m serious, it can happen.
It’s common knowledge that CIDP (or any infused med) can irritate the veins. I forget what the medical term for this is but it was discussed on the CIDP forum about a month or so ago.
He’s been getting stuck every 3 weeks & having a THICK syrup like med infused into his body. YEAH…his veins are going to get irritated! That is the reason why most dr’s want their patients to get ports. It makes life so much easier & veins aren’t damaged.
And then on top of it to have the dr call him a brat?!??! I don’t think so! I don’t know how you made it out of that dr’s office without kicking that man in the shin.
From your description I do not believe Mason’s CIDP is in remission. Pain is the first indicator of active CIDP with children. There may always be some residual pain but if his pain has increased since stopping the treatments that is a HUGE clue to you that his nerves are being attacked.
You never even reached full life of IVIG. How would the dr even know if it’s in remission then? Most people know they are in remission when they can GRADUALLY lengthen the time in between treatments. It’s ridiculous to believe stopping all treatments while a child is still on every 2-3 week infusions is a good idea.
When Emily was first dx’d I found a website that explained what the results of the EMG should be for a CIDP diagnosis. I cannot find it now – I have spent many hours searching for it. I believe the site said anything under 26 (whatever the measurement is) is indicative of CIDP. BUT remember you can still have a normal EMG & have CIDP.
From what I was told by the MDA dr you cannot get an accurate reading on a child who is screaming & upset. I went through this with Emily. Apparently her first EMG was not accurate because she was hysterical & we had to hold her down. The MDA dr performed 2 more EMG’s. She could only do the 1st part of the test (with the external shocks) & could not put the needles in to finish because Emily would start screaming. What child wouldn’t? It hurts & it’s scary!
I’m going to PM you my phone number – in case you want to talk.
December 28, 2008 at 3:27 pm
I resonded to your pm, check.
Dawn Kevies mom
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