EMG’s – how many did you have and were they consistent?
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November 30, 2011 at 11:57 pm
Hello all, hope everyone is doing well! I appreciate any advice/help yall can offer! I am in diagnostic limbo right now- several dr’s have mentioned CIDP as a possibility- i have my Lumbar puncture in the morning.
I have had two emg’s- the 1st one only about a two or three weeks after my neuro symptoms began- it was interpreted by the physiatrist that did it as normal with the exception of demylenation in a common area- i believe it was the peroneal nerve- he thought from weight loss and since I cross my legs.. the neurologist looked at it and said in all areas my sensory and motor nerves were slow
my symptoms continued to worsen so that neurologist wanted to confirm his theory of CIDP and start IVIG, however his emg he said was normal, diagnosed me with BFS, or possible isaacs syndrome (which didn’t really explain my symptoms)
Now i’m with a neuromuscular specialist who will perform yet another EMG here in a week or two, after getting the LP results
Did any of yall have multiple emgs? Were any of them read as “normal”, were they all consistent with each other?Neuro exams, tests and EMG’s are all so subjective, I wish we could just take a test like a pregnancy test and it tell us yes or no.. maybe someday!
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December 1, 2011 at 4:45 am
[QUOTE=bny806]
Did any of yall have multiple emgs? Were any of them read as “normal”, were they all consistent with each other?
[/QUOTE]Yes, I’ve had loads of them – and NCVs too – the needle and the taser I call them
No, all of mine have showed demyelination, slowed or absent conduction etc.
No, they have not been consistent, I was worse, then I got better, then I got worse again, then better, now worse etc. -
December 1, 2011 at 12:47 pm
I’ve had a bunch as well. All of mine have been consistent with GBS/CIDP with the exception of one that was done during my period of remission (doc wanted to get a new baseline level on me). I’ve been lucky that all have been been done by my neuromuscular specialist who also specializes in EMG/NCV testing. He’s never had any doubts about what the tests are telling him.
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December 1, 2011 at 7:08 pm
Emily has had 3. The last one was in early 2007. All showed demyelination.
Kelly
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December 2, 2011 at 10:50 pm
Thank yall all so much for replying, I really appreciate you taking the time to respond! Well, I guess i’ll get a 3rd emg and see what those results are- no one can decide what the heck is going on.. Hopefully our 3rd EMG and the trip to the university med center next week will give us some good news… THanks again, I really appreciate yall!
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December 7, 2011 at 2:25 pm
bny806,
The hardest time is the diagnosis period. When I suspected that I had “something wrong”, it took about 5 years to get diagnosed. My symptoms were initially not as severe, but all of my EMG’s and NCV showed demyelination and slowed conduction and in my legs there was axonal loss.
My LP was only slightly elevated. It was abnormal, but not by much. In my case, it took a nerve/muscle biopsy to finally confirm my diagnosis.
Over a 22 year time period I have had 6 EMG and Nerve Conduction tests. 4 before diagnosis and 2 after.
Dick S
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December 7, 2011 at 10:38 pm
Dick S- WOW 5 years!!! I can’t imagine!! What condition were you in after 5 years?? I had another emg today and it was normal, the dr’s at the ALS/Neuromuscular university clinic looked stumped.. they put the needles right into my muscles that are barely functioning and have atrophy and they looked normal- so strange!
They ordered a skin/nerve biopsy – awaiting to hear just when it will be.. Do you exactly what they look for on those??
THey are talking about doing an IVIG trial, but not sure how insurance will cover that without a diagnosis of something! -
December 21, 2011 at 1:53 am
They used to do these on a regular basis – at least one a year. But on about my third or forth visit to Mayo in Rochester my neurologist (Klein) said the research in CIDP patients indicated there was no value in repeating EMGs if there were no significant symptomatic changes and they stopped torturing me!
I have to say mayo does a much more thorough job than my local docs – even testing my face – ouch.
I made it quite a long time without a repeat until last summer when my arms and hands took a huge turn for the worse and they retested them – showing a huge decline in the results.
My case has always been atypical with my lower extremities being several impacted from the beginning and with lesser in the upper until last summer.
Still do not know why this was the case – but the upper caught up with a vengeance and the EMG showed that.
So glad though that the EMG is not used regularly – I dread them terribly.
They also used to repeat spinal taps and that has taken the same course – with a repeat only with a significant need.
Lisa
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December 28, 2011 at 10:38 pm
Thanks Starli! I have never had one in my face, though I have facial weakness (every muscle including my face trembles when I use it), so I think it would probably be a good idea, though I am scared it will show something really bad still. The university here has done a decent job, but I am afraid that a trip to MAYO may be in our future to get more answers.. I have had two lumbar punctures in the past 4 weeks – ugh.. not awful, but not something that I want to keep getting! Thanks for your info, Hope you are feeling well, and getting better!
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