Dr. App’t EMG/NCV, good and confusing news
AnonymousAugust 28, 2008 at 11:16 pm
I had my appointment today. Neuro saw me again for the first time in three years. I had switched around Dr.s, trying to save a buck. Anyhow, I decided to go back to the one who diagnosed me, treated me, and would probably know what was what.
So… I had stopped immunosuppression therapy due to lack of insurance and funds. I asked him about starting back. He finished his exam and said “I (the Dr.) would never have taken you off the immunosuppressants, and then would have wondered how effective they were or were not. Now that you took the chance, we can evaluate what happened.” What happened, as he said, was that the disease progressed slightly since the last appointment. So, he said the physical damage I would have from the innumosuppressants would not justify the risk, since I didn’t get that much worse, and that the immunosuppressants didn’t make me any better.
Then we talked about treatment, he said that nothing really seemed to be making a real difference(I have already tried IVIG, different drug therapies, etc.), so hang in there and treat the pain. BUT he also wanted me to have another EMG series to see where the progression was.
After the EMG, and BEFORE the neuro saw and evaluated the results, the Dr. who did the EMG said that the results were almost exactly the same as 4 years ago. And that there was no sign of demyelination, only axonal damage,which was there before.
SO… GOOD NEWS, I am not getting worse disease wise. BAD NEWS, (Or not), I don’t have a medical regimen for recovery. ALREADY KNOWN NEWS, there is little expectation of recovering the sensory axonal loss I already have. The EMG Dr. used the word “PLATEAU”, which is GOOD.
In the TOTALLY BAD NEWS department, each and every Dr. understood that I have a lot of pain and will say that I should seek medication to relieve the pain. Right now, I am looking at “NO BETTER, NO WORSE and MANAGE YOUR PAIN.”
In a few days, the neuro will read the report and pass his judgement on it and make it official. In many ways I am happy, sad, and still hurting.
August 28, 2008 at 11:29 pm
Things sound pretty positive from a demylienation stand point. Hopefully you can find something to help you with the pain. Since with no treatments, immunosuppressants, ivig there has been no worsening, does the doc suspect gbs? Is the pin you are experiencing gbs residuals? This disease is so confusing. That plataeu word caused us so many problems. We were orig dx w/gbs, then cidp and then because he plataeued w/ no treatment for 3 months and full recovery on repeat emg, we were redx w/gbs and here we are now cidp???!!! This disease messes w/the body and the brain. Anyway, overall, your news sounds pretty positive, I am happy for you and hope you find reliable pain relief soon.
Dawn Kevies mom
AnonymousAugust 28, 2008 at 11:51 pm
Dr. does not suspect GBS. GBS has a short active phase, always less than two months. I have had this for almost 20 years. It has been bad for the past 9 years. PLATEAU might mean that I have stopped getting worser. (That would be good)
Residuals, yeah, I guess that would be the best name for them., The pains I have left over.
According to the EMG, there has been little or no degradation over a four year period, not just a couple of three or four months. I don’t think you can call any kind of plateau until there has been a significant time pass. But then I have talked with several people who have “recovered, plateau’ed, or whatever” for more than 10 years, and then have had relapses. So I never figure I will be rid of it.
GBS and CIDP are the same animal, just different ways that they get you. GBS is fast and hard, CIDP slower and much longer. In GBS, recovery starts sooner, and may or may not be complete, in CIDP, recovery is slower and the symptoms linger. Residuals happen in both, and may be anywhere from annoying to incapacitating.
As to pain relief, I am still hoping to find ebough pain relief to stay somewhat mobile and not loopy.
AnonymousAugust 29, 2008 at 12:13 am
I know it is not completely “official” yet, but I have to give a cheer that there has been no increasing damage in 4 years. That is really good. I do have a question–did they test more than one nerve? Because stability in one nerve with progressive symptoms probably would not mean too much, but stability in a few nerves is more likely really to be stability.
Pain can progress despite no further damage, just based on the existing damage plus/minus the fact that none of us are getting younger.
I understand perfectly disappointment that there is nothing to do to help the underlying process, but would like to encourage you still that there is a lot to be done and that you are working on regarding pain management which is so extremely important.
I just wanted to say that I think it is good to have stable disease and be able to focus on managing the symptoms from past damage, than to have fulminant progressive disease even though, like a lot of us, we wish most of all for a cure for it all. Sometimes the second best is not too bad, though. I am not discounting your right to feel ambivalent about these results. I have spent a lot of time recently upset with the fact that I am getting no treatment and not getting better. I know I should look at it as I do not need treatment now and that I am not getting worse, but still I wish life were different. I really wish I would wake up and this was all a nightmare, but it seems that is not going to happen, so I am trying to be content with what is. Anyway, I celebrate for you that you have the fortune to be stable for four years and hope that this continues and that everyone turns right now to making life better by getting a better pain regiment for you.
WithHope for a cure of these diseases
AnonymousAugust 29, 2008 at 1:12 am
Hi Dick! I started out with neuropathy 19 years ago but back then they diagnosed me with Lupus. The neuropathy part has always had a question mark in my records. It was mostly sensory back then but then moved to Motor/ Sensory but was demylinating with axonal degeneration. I went into remission and was doing fantastic for 3 years. Then I got hit by a car and injured my spine. Then something happened to my nervous system. When they did my last EMG they said CIDP of unknown etology.
I worry about my diagnoses them telling me there is nothing they can do! That is my biggest fear. An mine is still progressing and getting worse. Motor and sensory. Had a good day yesterday but today has been heck!
And then I worry about the medical bills! Wondering what this is going to cost me. I only have Medicare and no telling what I am going to owe Duke when they get done with me! Not cheap being sick! Not cheap at all!
So sorry you have been through all this with no answers. My last EMGv showed Severe Chronic Motor/Sensory Axonal Demylinating Polyneuropathy.
But I was never in alot of pain until June. Then the pain started. Alway’s had the numbness and tingling mess. Never pain like what I am dealing with now.
I feel for you! Really do! I have a feeling the damage with me is irreversible too! Meaning I will have to live with it! Easier said than done!
I feel for you! I really do! Just hope they find my cause! But hate to hear your bad news! Wishing you my best!
AnonymousAugust 29, 2008 at 5:34 am
Dick I’m not sure whether to congratulate you on your plateau or not, has it’s good points and bad points as you say. I am happy to hear there has been very little demyelination in the last four years – perhaps something worked to stop the attacks – or maybe your body just set itself right? I am very sorry to hear about the pain you are in though, I know how limiting the pain can be. I hope you find something that works for you soon, or some combination of things. And if that doesn’t happen then I hope you can find something to take your mind off of the pain – I recommend a dog and a chocolate martini. 😉
AnonymousAugust 29, 2008 at 10:15 am
Hi everybody. Dick, congrats on the 4 year plateau, and hope you find some great pain management asap.
I should know this, I suppose, but what is the difference between demyelination and axonal damage? Neuro was never one of my areas, but I am learning! 🙁 Is axonal damage actually total nerve cell death? Is one worse to have? Does CIDP include axonal damage as well as demyelination?
I hope this isn’t considered hijacking a thread! If so, I apologize.
AnonymousSeptember 4, 2008 at 1:53 pm
a couple of answers, and I got the EMG results in hand..
withhope, yes they testes several areas in both the feet and hands. They ran the tests up my thighs as well.
The EMG showed slight changes, but not enough to say that the difference was significant. There was however still a demyelinating component. I suppose that is the difference between the tester and the official report. The axonal damage was significant and permanent.
Mags, the nerve cell is kind of like an electrical wire, copper on the inside and rubber on the outside. The rubber is the myelin, and the copper is the axon. In a nerve pathway, there are many “segments” along the wire length. The signal is accelerated with a myelin covering, and where the myelin is missing, a misfire, mistransmission, or misinterpretation occurs. You have schwann cells that repair myelin, but nothing repairs an axon. It seems like, pathways change for muscle activity, but sensory loss seems to be permanent.
As far as one being worse than another, really they both function together. Each is equally challenging. With CIDP there is both.
I love dogs, but unfortunately have stopped drinking. (Maybe an extra neurontin)
You must be logged in to reply to this topic.