Old 05-16-2013, 04:31 PM #1
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Question Clear atrophy - clean emg. How?

Hi there its Danny
Just to give you an update, I have had my EMG today and the Neurophysiologist has said there are no issues on my EMG. This is good news of course but kind of hard to take in.

He agreed I have atrophy of left thigh 1 inch at upper thigh going downwards to knee 1.5cm, If I walk any distance I get pain in the left thigh (I also have left foot atrophy) and pain in my knee which is boney again as well as muscle loss of a smaller degree in left calf

Just to note I have NO physical injuries on my left leg caused by strain or anything, this is clearly a neurological issue.
I have fasciculations permanently in both calves but more active in the left.

I have random muscle twitches (thigh, chest, arm, buttock) and also I get these full limb jerks like ive had an electric shock, my arm or leg jerks and even both legs or both arms jerk at same time. Sometimes I get it where my head throws back and I blink with both eyes which is really weird.

the symptoms started over 3 months ago after receiving Hepatitis Vaccine which doctors have been informed.

Seeing the atrophy of thigh and pain when I try to do exercise of any type such as walking combined with all my other symptoms makes it harder to believe how trusting this clean EMG can be.

Any constructive opinions or comments will be greatly appreciated and I know nobody on here is a doctor and im NOT expecting a diagnosis from you but id really appreciate your time and thoughts on the matter.

Thanks for your time Danny
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Old 05-16-2013, 04:52 PM #2
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Default Re: Clear atrophy - clean emg. How?

You were at your Neurologist's office, where you got your EMG done and it came up clean.

You told him you had some "atrophy" in some regions of your body and he agreed to this.
Why didn't you further discuss these findings with him while still at his office?
You left his office with doubts still of why you were seeing atrophy in some parts of your body.
You think it might be (atrophy) neurological related.
Why don't you seek a second opinion from another Neurologist for your own peace of mind?

Just a suggestion.


NH
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Old 05-16-2013, 05:02 PM #3
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Default Re: Clear atrophy - clean emg. How?

I agree with NH. A second opinion might be needed, or are you scheduled for another apt with the dr you saw? Are they going to do any more tests? If I were you I would write down all my questions and fears. It seems like you left with more questions than answers.
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Old 05-16-2013, 05:48 PM #4
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Default Re: Clear atrophy - clean emg. How?

Thanks for your reply, No I wasn't at the the Neurologists office, like I said the neurophysiologist who did the EMG he agreed about obvious atrophy, which he measured. Thanks also for the suggestion about a second opinion, of course I will go down that line also. I have an apointment with Neurologist nx month also.

I have many questions for my neurologist which I will ask him at the appointment.

Thanks Nighthawk and Vickym for your input

In the meantime I would really like peoples opinion on my original thread i.e. reason for clean EMG and possible illnesses that would cause these specific symptoms.

Thanks Danny
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Old 05-16-2013, 05:49 PM #5
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Default Re: Clear atrophy - clean emg. How?

Have you had blood tests for your creatine kinase levels? I have some atrophy as well but they found that whenever I do anything physical, my CK levels go up over 300. That isn't super high (normal is up to 190 or so, depending on the lab) but it can indicate muscle damage.

Just a thought.
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Old 05-16-2013, 05:53 PM #6
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Default Re: Clear atrophy - clean emg. How?

Thanks Paul for the helpful input. Yes I got tested for that and my Neurologist said he would contact me if there was any problem with it. However as uve mentioned it , its another thing I can check with him in my next appointment.
Thanks Danny
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Old 05-16-2013, 05:57 PM #7
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Default Re: Clear atrophy - clean emg. How?

Muscular Dystrophy is a muscle disease with these symptoms
Progressive muscular wasting
Poor balance
Drooping eyelids
Atrophy
Scoliosis (curvature of the spine and the back)
Inability to walk
Frequent falls
Waddling gait
Calf deformation
Limited range of movement
Respiratory difficulty
Joint contractures
Cardiomyopathy
Arrhythmias
Muscle spasms

I can't remember all your symptoms from your other thread. But MD is diagnosed with a muscle bio. It is still early in your journey and could be anything.
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Old 05-16-2013, 05:58 PM #8
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Default Re: Clear atrophy - clean emg. How?

Also, I know that my legs have atrophied but they just now (today) took measurements. Up to this point, they have said lots of people are asymmetrical.

Another thing - I did some research and found that the first doctor that gave me an EMG was not even a board certified neurologist. I would go to the AANEM website and find an AANEM accredited neurologist.
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Old 05-16-2013, 06:07 PM #9
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Default Re: Clear atrophy - clean emg. How?

My partner, Michel, had clean tests on everything! His EMG turned up negative. In fact, we were told he might have auto-immune disease rather than ALS. His neurologist said there is a group of up to 25% people who can get a negative reading. However, he did have ALS. Most of the signs were there. But your case doesn't read like this. Do you have foot drop in your left leg? If you had a vaccine and these symptoms turned up so immediately and so specifically, it sounds like something else. The body is a complex thing and there can be so many different things happening.

It is amazing for me to read a lot of posts where people are searching for proof of ALS. Some people are convinced they have it despite all the evidence pointing to something else. We were always searching for proof it wasn't and would celebrate each time his tests came back clear. I know that some cases take years to diagnose!

We were told he had auto-immune disease because he wasn't showing any upper body signs. All of his neurologists were amazed he didn't have any swallowing issues. In fact, he didn't have any major swallowing issues until towards the end. His upper body signs did show themselves a couple of months later. And issues of atrophy acutually didn't show at the beginning anyway. This comes later!

My point is this, like others, are you asking these questions you have to your neurologist or the people who do the test? Are you searching for other possible diseases or causes? We would scour the internet for anything else that might explain his symptoms. Also, be careful, the internet is an amazing tool, but it can often lead you to where you point it.

I wish you all the best in you search but remember ALS is a disease which is really determined by eliminating every other possibility and so different for every person. I would give everything I have for his disease to have been anything but ALS!
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Old 05-16-2013, 06:08 PM #10
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Default Re: Clear atrophy - clean emg. How?

thanks Vickim. Il try and check out if the Neurophysiologist was certified or not, good point Paul. I agree that lots of people are asymmetrical but my left leg has happened in the last 3 months and it is obvious to friends family and doctor aswell. Its also the fact that I have pain on that thigh as if other muscles are working harder to compensate for the loss of muscle in other areas of the thigh.
thanks Danny
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Old 05-16-2013, 06:19 PM #11
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Default Re: Clear atrophy - clean emg. How?

Thanks very much for your message Graham, and im sorry for your loss. I have an appointment next month in which I have a lot of questions to put forward to him, that is one of the reasons I put this thread on for anyone else who has had similar symptoms as me and what other possible causes could be, or anything they got tested for.(which gives me more ammo at my nx apt)
I am certainly not searching for proof of ALS/MND im just looking for peoples thoughts on other possibilities or other lines I can go down. My symptoms are all of genuine concern, and at no point did I mean to upset you in anyway, and if I have I am sorry for that.

Thanks Danny
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Old 05-16-2013, 07:22 PM #12
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Default Re: Clear atrophy - clean emg. How?

I feel exactly the same. Lots of pain in my thighs and shoulders. I fatigue quickly too. I feel as you do - the muscles that still work are being overworked and starting to get strained.

Keep us posted, our symptoms sound similar. Good luck.
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Old 05-16-2013, 07:42 PM #13
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Default Re: Clear atrophy - clean emg. How?

Hey dannyr,

the symptoms started over 3 months ago after receiving Hepatitis Vaccine which doctors have been informed.

There seems to me to be a direct correlation with the vaccine and your symptom timeline. You say the Dr.s are aware of this, but what do they say about it? Do they just blow that off as insignificant?

Sounds like that is a good place to concentrate your thoughts/investigations/tests. Hepatitis can be a bugger too. Don't disregard that amazing coincidence.
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Old 05-17-2013, 05:24 AM #14
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Default Re: Clear atrophy - clean emg. How?

Hi Here4her,

Thanks for taking time out to respond to my thread, yes you are absolutely right when I told my first doctor they pretty much blew it off as insignificant as did my neuro on first apt, I get the feeling they don't like going down the road of vacccines causing these symptoms, possibly for legal reasons or just because they think its coincindence.

This is another thing I am definitely going to bring up at my apt nx month with my neurologist.

The thing is though even if it was the Hepatits VACCINE that caused my atrophy, fasciculations and twitches how would it change the way they approach it, as far as I know there is no treatment they can give to reverse the Hepatitis vaccine anyway?

Id like to know what people think about this?

Thanks for taking time to read and reply, Danny
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