Is one EMG enough?

[smoothlines]

Hello,

I came across this forum this morning while looking for some answers and thought I'd register and post. I'm a 39 yr old male, and I've been Dx'd with having ALS only days ago, and needless to say, I'm scared and still in a state of shock.

For myself, the fascics started in my left arm in Feb 2008. I lost the arm muscle, strength and the ability to move my fingers in the left hand before the twitching progressed to the whole upper body and the right arm. I'm now losing all of the above in the right arm and hand. With an open mouth my tongue quivers, but I'm still able to speak fairly easily and swallowing and breathing are normal so far. Although, I have noticed my laugh has changed to a somewhat deeper laugh. My reflexes are very brisk as well. No cramping as of yet. My legs felt normal with no fascics, to my knowledge, prior to being told I have ALS, but now I have some small fascics.....Stress/anxiety perhaps.

After the Dr's examination, I had an EMG done only, and literally 5 minutes later I was told I have Motor Neuron Disease and if I knew what ALS was. It is the only test I've had done. I wasn't expecting a diagnosis that quickly, so I went for tests that day alone. I don't remember much afterwards, as that hit me like a ton of bricks.

Is it possible to know that quickly? Should I seek a second opinion? MRI ?

Thank you

John

 

[tmasters]

Smoothlines,

I can't believe the shock you must be feeling. Don't buy it yet.

You DEFINITELY should get a second opinion, preferably from an ALS specialist. It's disturbing that he diagnosed'ed you this quickly and based solely on the EMG. There are many things that can cause an EMG to show ALS-type symptoms.

Was the doctor a neurologist? Does he specialize in ALS? Was this the first time he saw you? Usually a neuro will want to observe progression of symptoms before diagnosed'ing. Did you have any blook work done?

-Tom

 

[rose]

HI John,

Welcome to the forum!

I'd definitely seek out at least one more opinion. Are you being seen by an ALS specialist? If not, that is a start as to where you should ask to be referred to. Some major medical centers are known for their expertise more than others. I'm sure some Canadian forum members would have a better idea as to which excel.

About the twitching, the twitching does not cause the muscle wasting. Maybe ths will help you find them less freaky. Its not like if you see twitching in a muscle it means that that particular one is doomed to "go" next. This is probably easier for me to say, as I'm not very twitchy. Its just that I've got weakness and visible atrophy in some areas that I've not been aware of much/any twitching, contrasted with other places that fasciculations seem much more constant, but don't feel any weaker than the other weak places (does that make sense?)

Good luck to you, and please get more input. ALS is the conclusion only after many other types of tests than just emg. I think at the top of the "do I have als, is this als" forum part of this website, there is a "sticky" that lists and goes into the reqirements for an ALS diagnosis. This would be good for you to read, and help with what you expect your doctors to have determined/ruled out.

take care

 

[Danijela]

Hi John,

sorry to hear about your diagnosis. I fully understand how you feel right now. My partner had two EMGs with about 6 weeks between them, and a whole range of blood tests to rule other conditions out. Even then, we asked for a second opinion, and spoke with an MND specialist who confirmed the diagnosis.

While I think that an experienced neurologist can suspect ALS that quickly, a responsible one would conduct some further tests. As Tom pointed out other conditions can cause EMG results that resemble those of ALS.

 

[smoothlines]

Hello

Tom: Yes the Dr is Neurologist and ALS specialist. And yes it was his first time seeing me. No blood work has ever been done to me either. It took me by surprise that it ended there. I've had back problems ...they're gone now, but still.

Rose, thank you, it did make sense and I will read the "sticky".

Danijela, thank you very much as well.

I feel like my heart is going to punch through my chest right about now too. It scares me to have to go through it all once again, and to possibly here those words once more.

I thank you more than you know.

John

 

[Danijela]

John,

I found this on Motor Neuron Disease Association pages (UK). I think my partner had all in the first group, before his diagnosis.

Clinical Laboratory Tests that can be considered in the diagnostic pathway of MND/ALS:

General medical tests:

Full blood count
Biochemistry, e.g. urea, electrolytes, liver function tests
Thyroid function tests
Erythrocyte sedimentation rate
C-reactive protein (CRP)

Other tests that can be considered:

Vitamin B12
Folate
VDRL test
Glucose
Lyme antibody titers
Tests for Collagen vascular disorders
Acetylcholine receptor antibody titers
Creatine kinase
Antiganglioside antibodies (e.g. anti-GM1)
Protein electrophoresis
Autoantibody screen
Muscle biopsy
CSF examination

 

[BarryG]

Hi John, Welcome to our community. I too find it strange that you have not had any blood work done. I had a lot of blood tests, numerous EMGs, MRIs and a whole bunch of different neurologists pushing, pulling and poking me before I got my diagnosis. Have you been to the provincial ALS clinic? If you haven't that would be the next step.

http://www.als.ca/if_you_have_als/health_clinics.aspx

All the best

Barry

 

[smoothlines]

Hi Barry

And thank you for the welcome. I've been told my paperwork has been sent to the Ottawa clinic, just over the river from me. I'm not sure how to ask for or who to ask regarding a second opinion yet. I guess I will start by contacting my Neuro and seeing if he'll send me to see another Neuro.

When asking for a second opinion, does one have a right to ask to have certain tests done, or does it ultimately come down to the Dr's discretion? In other words, can they say no?

Thanks again Barry

John

 

[GlenBrittle]

Hey John,

If your docs have been sent to Ottawa , chances are Dr Peter Bourque will see them. He is the Neuro that diagnosed me in October.

I felt the same when I got the ALS news. As you choose to fight , it will get somewhat easier.

Its all about attitude and energy.

Im sticking around until they have the cure. Go Stem Cell Researchers .

I am a little shocked that only 1 EMG told the tale. Like others , I was poked and prodded and scanned many ways before.

Welcome to the forums, welcome to the fight.

Glen

 

[Zaphoon]

Hi John!

I'm agreeing with getting a second opinion. The doc that gave you that diagnosis may have seen all he needed to see to be confident and he may have it right but... a diagnosis of ALS always warrants a second or even third opinion.

Zaphoon

 

[smoothlines]

Hi Glen, Zaphoon

Thank you for the welcome. Dr Bourque was the Dr. that diagnosed me as well. The ALS Clinic / Rehabilitation Centre in Ottawa will be one of my next stops. I was alone when diagnosed and wished I wasn't. I find this forum and others like it will ease the stress and fears I feel now. It's very hard to read some of stories and things happening to some people here, and wonder what's in store for me. Some I can't read to the end, and videos I can't yet bring myself to open and watch. Attitude is everything, and I plan on fighting....it just scares me right now.

John

 

[Al]

We were all scared at one time John and some of us still are. Confronting those fears and stirring up the resolve to fight can take some time. We're here to help when you need it. Don't be shy.

AL.

 

[Marjorie R. Wilcox]

Rick had only one EMG, added to a couple blood tests, and several visits of testing his reflexes, measuring muscles, and telling him to try to squat, try to get up from a low stool, and trying to stand up on his toes... walking a straight line, and many other motor response tests. A muscle biopsy and spinal tap was scheduled but canceled. We waited from May to October with the knowledge that he had some kind of motor neuron disease. Then we attended a powwow with the professionals and the consensus was ALS.

There has been no mention of further tests nor have we proposed getting other opinions. He has been treated with great care and respect and we believe the diagnosed. He will go in once a year unless we need help in between. All helpful mechanical aids have been offered as soon as we request them.

The neurologist and pulmonary specialist are carefully encouraging us with support and encouragement that Rick's progression if obviously slow. They promote his diet and praise his attitude. We have spent long sessions of discussions with the pulmonary specialist on the phone. He always quickly returns our calls.

We haven't been to an ALS clinic, just the VA hospital clinic in ALbany, NY.