EMG Question

[ecutchins]

Well just got a call from the neurologist's office and they've rescheduled my EMG from the 24th to the 30th. The doctor wants to do extensive testing and the appointment on the 24th didn't allow enough time. I've been rescheduled to the last patient of the day so he has plenty of time for the testing. I have no idea what extensive testing means.

Waiting and not knowing is pretty bad.

 

[Jeff Long]

Ed,
Hate that you're playing the waiting game; I know how bad it sucks. I had my first (of three) EMG on Aug 1st and my appointment for the results wasn't until Aug 31st. I'll never do that again! Neuro said "I don't know what you have, but it isn't ALS." I celebrated for a week in FL with the family, came back and got a second opinion in October. Second neuro was more experienced with ALS and EMG. Did the test himself (head to toe, all limbs, back, cheek and tongue... I still hate that guy!). He read the results for about 20 minutes before he made the diagnosis. Confirmed a month later on my final EMG.
The point isn't that 'it could get worse', it's simply that these guys can be wrong. Make sure you demand the time that this testing/exam require, and if you're not satisfied consider a different doctor. He may be smart enough to be a neuro, but not all of them are created equal! You are your own best advocate for quality care, don't let yourself down!
The list of things this could be is long, complicated and bizarre; we're all hoping it's one of those obscure ailments. Like the North American tree frog enzyme or something stupid!

 

[hjlindley]

Just a word to the wise, my neurologist let me take painkillers before the EMG and he said it would change the results. He knew I wasn't driving. You might ask about that, it made the last one so much more bearable. And yes, it takes a great deal of experience to do a proper EMG.
Hollister

 

[dalvin]

dont give up. and just because the emg may not show anything doesnt mean that something is not wrong. soe things dont show up on the tests and they have to rule out everything else.

 

[Clearwater AL]

("The waiting is a total pain and I just want to know something.") Reading in your first post your first appointment with a Neuro Doctor was about this past June... find a lot patience. You may need plenty of it in the months to come, and maybe the next year or longer. ALS can be extremely difficult to diagnose. My neuro appointments started out being every three months but are now every 2 months unless something new develops then I can see him within a week or so. (Something new did develop and saw me 10 days later ordering my 3rd EMG and Nerve Conduction Tests.) But, this "Neuro Thing" is like a finger print... no two cases are the same. You may know something soon. But... be prepared to dig deep for patience like you never have before.

 

[Clearwater AL]

PS. You wrote ("I have no idea what extensive testing means.") There is the full "Gitmo Treatment" as Jeff Long wrote to where they can do EMGs. Hope yours is just arms.

 

[Clearwater AL]

For those unfamiliar with the word "Gitmo"... U.S. Navy Base Prison at Guantanamo Bay.
Interrogation techniques.

 

[ecutchins]

Well today is the day that I go in for my extensive testing. I did get to see a written report on the EMG on my right arm. The results were abnormal with diffuse and acute chronic denervation. I'm not sure what this means and hopefully the neurologist will be able to explain it this afternoon.

I'm trying to put together a list of questions for the neurologist and would really appreciate any input.

Thanks in advance.

 

[hjlindley]

The innovation can be caused by many things, ulnar nerve entrapment, cervical nerve entrapment. The big question for the neurologist saw a dennervation/reennervation pattern. What happens in ALS is the large nerve die and the small try to take up where they left off.

 

[ecutchins]

The good news is that my MRI of the cervical spine came back good so I think cervical entrapment has been eliminated. I'm also pretty sure that it's not ulnar nerve entrapment.

I have an odd feeling in the bicep of my right arm and the neurologist noticed muscle wasting. The first thing he noticed is that the muscle between my thumb and forefinger on my left hand had severe atrophy. I've noticed in the last month or so that the fingers on both hands are starting to curl. I've also noticed that my right arm sometimes feels like it weighs a ton and I feel like the weight is pulling down on the muscles in my shoulders.

I'm lucky that my girlfriend will be at my appointment this afternoon. I seem to just get overwhelmed with information and can't remember the questions to ask.

 

[ecutchins]

Well yesterday was quite a day. I had the EMG on my left arm and both legs yesterday which took forever. The appointment started at 3:30 and I walked out of the clinic at 6:45 last night. The neurologist was overwhelmed with what he found and is referring me to the Mayo Clinic. I was really surprised when we talked to him. He said that from the EMG on my right arm that he thought I had ALS but after the test on my left arm and legs he isn't sure anymore. Here is what he found yesterday:

Ulnar nerve entrapment in my left arm.
Carpal tunnel in my right wrist.
Neuropathy in both feet. I already knew this and I've been dealing with this for several years. It is no worse than it was when I first noticed.

He didn't offer any opinion why I have wasting in the shoulders and the right and left arms with the right arm being much worse than the left. He did mention that he saw fasciculations in both the right and left arm. He is also ordering some blood work.

I checked with my insurance company this morning to see if the trip to the Mayo Clinic was covered. I have to get the neurologist to send a request for the referral to my GP and then she has to make the referral to the Mayo Clinic. I already have an appointment with my GP tomorrow morning for something else so the timing couldn't be better in this area. Hopefully the request from the neurologist will get done today and the GP can make the referral tomorrow. I have no idea how long it will take to get into the Mayo Clinic but I'm hopeful I can get an appointment this month. I'm glad the Mayo Clinic is only a couple of hours away.

I'll keep updating this post as I find out new information.

 

[ecutchins]

Got the referral to the Mayo Clinic and when I called to make the appointment they had just had a cancellation so I'm headed down next week. I've heard great things about the Mayo Clinic from people so I'm eager to get down there and see what they have to say.

My local neurologist also ordered some blood work. I was a little surprised when I stopped by the lab to get the blood drawn. I dropped off my slip for the lab and took a seat. It seemed to be taking a while and I saw the lab tech with a sheet of labels that was quite long. She finally called my name and when we went to the draw station she was carrying this long sheet of labels. She then started pulling vials off the shelf as she was looking at the labels. She ended up pulling 16 vials and I asked if those were all for me. She said yes and that this was the most she'd ever drawn from one patient at one time. She said she felt like she should offer juice and crackers after she drew the blood. I asked what the tests were for and she told me some were vitamin checks, liver enzyme, lyme disease, CBC and a bunch that she didn't know what they were. I've previously had a lyme test but it never hurts to have another in case the first was a false negative.

So a little more waiting but maybe I'm on the road to finding out what I have.

 

[vickim]

I will keep you in my prayers and cross my fingers and toes. I know about the blood tests, each dr ordered their own tests. One showed that at some time in my life I had rocky mountain spotted fever! Go figure.

 

[affected]

all the best to you, they are doing a thorough job of checking everything and then you get this interpreted by experts, and next week, that's great to get in so fast. I know it all seems long rather than fast, but we have all been there

 

[sadiemae]

Stay strong, and good luck.