EMG Results & Atrophy

[miss91]

HI Everyone,

I had my EMG last week. Since I've last posted, my fasciculations have continued and my right foot/ankle and especially right hand have REALLY started to atrophy. My hand/wrist look like Skeletor with the tendons/bones sticking out, and there are little dips in the wrist. Also my wrist and arm are very sore. The foot also has tendons/bones sticking out, but that has seemed to slow down the atrophy while the hand has sped up. My neck is in continual pain and is SOOO skinny and feels so weak.
I went in for my EMG with my husband. I was very nervous. Dr. B. at my hospital (a division of MAYO clinic, but not an ALS clinic) who did the EMG is a neurologist, Diplomate of the American Board of Electrodiagnostic Medicine, and Diplomate of the Clinical Neurophysiology Board, AAN. He performed the EMG and told me he would do his calculations and then get the results to my own neurologist, Dr. P at the same facility.
Today we got up at 5:30, drove an hour and a half, and found out my doctor is NOT in this morning. My husband had to take an unpaid day to take me there. I was nearly in tears so the nurse decided to print off my report anyway, even though she's not supposed to. She "squeezed" me in at 3 pm today to see my Dr., so I will be making another drive.
Basically, the results of my NCS and EMG are:

In the right upper extremity, she has normal right ulnar motor study with latencies and amplitudes and conduction velocity and F-wave response and normal median sensory and ulnar sensory studies with latencies and amplitudes. In the left upper extremity, she has normal left median motor study with latencies and amplitudes and conduction velocity and F-wave response and normal left sided median sensory and ulnar sensory study with latencies and amplitudes.
The right lower extremity was checked with peroneal motor study with normal latencies and amplitudes and conduction velocity and F-wave response. The right sural sensory study was normal with latencies and amplitudes.

Needle EMG was done from both upper extremities between C5 to T1 myotome including cervical paraspinous muscles, and that was normal.

Needle EMG was done on the right lower extremity between L3-S1 myotomme including lumbar paraspinous muscles, and that was normal.

Needle EMG was done at T8 and T9 level paraspinous thoracic muscles on both sides, and that was normal.

FINAL DIAGNOSIS
This study was normal. I checked both upper extremities and right lower extremity including cervical and lumbar paraspinous muscles also including thoracic paraspinous muscles bilaterally, which increases the sensitivity of ALS and the guideline was as per the American Academy of Neuromuscular and Electrodiagnostic Medicine as well as the Medicare regulations.

There is no evidence of any median neuropathy or ulnar neuropathy or myopathy or sensorimotor neuropathy or peroneal neuropathy or sural neuropathy or any evidence of any plexopathy or any anterior horn cell disease or any radiculopathy by this EMG study.
COMMENTS:
1. There were no contraindications for EMG, verified by ME (Dr. B)
2. I was able to accomplish a pause prior to verify sites, sides, and proper markings were done.
3. The guidelines for the study were according to the Medicare guidelines and recommendations of the American Assoc of Neuromuscular and Electrodiagnostic Medicine.


OK, so that's what I've got so far. I know it looks "normal", but with ongoing atrophy (I showed the nurse my foot today and she said, "OH YEAH, I can see that!"), I don't know what to do/think. Obviously something is really wrong. There are so many people on here who get normal EMGs and then find out later it's ALS. So I don't know what to do, or what I should ask my Dr. this afternoon. Please give me some input. I'm sick of feeling nausoeous, tired, and seeing my body atrophy away. The only symptoms I haven't got yet are bulbar (my throat feels weird when swallowing but I can swallow easily and have no issues there), no tongue fasciculations, and no cramping. However I've looked for a reason for my atrophy of foot, hand (both right) and possibly neck and I can't find answers other than ALS.

So, anyone's input would be great. Thanks for reading and sorry it's SOOO long.

Missy

 

[miss91]

Oh, and I was already given a brain MRI, a ton of blood tests including Lyme, CT scan of abdomen/pelvis....I just wonder if I went too early? However if I can SEE atrophy, wouldn't it show up on an EMG?

 

[jrdoran]

Missy,

Wow your story sounds so very similar to mine. To date i've had an MRI, an EMG/NCV of right leg and arm, and numerous blood tests and several clinical exams by different neurologist of which I've passed fine. Everything so far has come back normal. My most fearful symptoms is atrophy of my wrists/hand area were as you say I can see muscle tendons and bones sticking out and there are "holes" in my wrist when I flex it or move it in certain positions. I've also noticed that my neck looks like it has lost muscle as well as my upper left bicep. These symptoms as well as slight balance problems (like when I'm bent over), muscle twitching, coordination problems (missing door handles, dropping things), and lately general fatigue of my arms and hands and from cardio, not to mention a feeling of my muscles trembling at times. I've been having symptoms since March '09.

I'm most worried about this atrophy and when I mention it to my doctor its like she doesn't even examine the areas I've said are atrophying.

I've got a general question for the others. Can atrophy happen and still nothing will show on an EMG?

 

[Moonmark]

Hi Missy,

I think you've got some great news there, with the clean EMG. I am no expert and, as you know, I am awaiting results of my own EMG and other tests, but, from what I have read, if you are having the level of weakness and atrophy that you describe, and it was due to ALS, then something would show on the EMG. But I will defer to the people here who know more than I do-- maybe Wright will see this and respond.

Good luck to you! I hope you get some answers soon for what is ailing you.

Sandra

 

[wright]

If anyone has muscle atrophy and it is due to denervation (which is what occurs with ALS and 100's of other conditions for that matter) or some myopathic process, the EMG will be dirty . . . END OF STORY. If you had muscle atrophy from disuse or simply losing weight, then the EMG will not detect that.

Atrophy is simply the loss of size of an organ or tissue . . . any organ or tissue . . . not just muscle. One can lose size for a gazillion different reasons. Your "atrophy" is not due to muscle loss from denervation because once again, your EMG was clean. Once again . . . END OF STORY. You could have some type of connective tissue disease that is causing your "atrophy" or who knows what else. As of right now, there isn't a SHRED OF EVIDENCE you have ALS. I'm not sure what your background is but it doesn't seem it is a medical background, if you think that what your symptoms and tests point toward is ALS.

The people that have clean EMG's and then are later diagnosed with ALS are almost always suspected of having at least a variant of ALS that involves upper motor neurons and will have upper motor neuron symptoms, which by the way you have none. EMG's cannot detect upper motor neuron problems. Upper motor neuron problems are determined with a clinical exam, which you passed. The symptoms you describe are lower motor neuron symptoms and an EMG would pick them up before you even realized you had them.

If any of that doesn't calm you down, then I give up and I suggest you get counseling.

P.S. I'm not saying that there isn't something going on with you; all I'm saying is that your story points away from ALS.

 

[crystalkk]

Missy,

I also think you have got some great news....He did a very extensive EMG and it was totally normal.
See what the dr says this afternoon, ask him what the next step is? Ask for something for your anxiety, it will help.

I totally understand how you feel and know how scared you are... but please try and think positive.

Did you have a c-spine MRI?

 

[miss91]

Thanks everyone. Wright, I hope you're right! I don't know for sure that I aced my clinical exam - I think I did well but was too scared to ask my neuro about all of it! I will today though. My neck is disgusting, the adam's apple is sticking out now and I feel it all tight when I try to talk/move my head/swallow, very disturbing. And no I don't have a medical background, other than I enrolled in fall Nursing School which I am right now planning to drop out of until I (hopefully) get a grip on my health. Also we have decided to list our house for sale and buy my mil's house - she willl move out. As my husband said, regardless of my health, it was a pain trying to afford our huge mortgage even when I was working full-time in accounting.
Crystal, the only things I think I have NOT had (that I can think of) are spinal/neck MRIs, spinal tap, or any nerve or muscle biopsies. I was feeling good about everything until I just went to the drive-thru and watched my bony sore wrist fasciculating like MAD.
OK, time for another looong drive to the neuro! Thanks for all your responses.
Missy

 

[crystalkk]

Missy,

Are you sure the twitches in your wrist wasn't your pulse. My wrist are bony and sore also and sometimes I will look at it
and i can actually see my pulse. Next time it happens see it you can take your pulse. I thought it was twiching when it first happened to me.

Good luck with your appointment and if he doesn't suggest the neck MRI...ask for it.

 

[awieleba]

Missy~

I know it is hard to understand or accept for that matter when you see your muscles thinning and all tests are normal. But you have to be happy that your emg IS normal and your clinicals are good. I know how very hard it is too move on but you have to. And, you will need something for anxiety, it will help. It helps me. I just try to feel good/reassured by the emg or clinicals that my progressing sx are not that bad and not showing up. I am still not diagnosed. Believe me that it is better to not have a diagnosed then to have one. Your life style may change but if you are walking/talking/driving/ and basically do well in comparison to those that are trully suffering, than be content. I know it is easier said than done and struggle with it myself.

Best wishes

april

 

[miss91]

Back from the Dr. He had no answers for me as far as my thinning foot, hand, neck. He said, "well the EMG is normal and your reflexes are normal so we can rule out ALS". April I believe you mentioned that you knew someone who presented with lower motor symptoms, had a clean EMG, then later on discovered they did have ALS. I guess the only thing that will relieve my mind is to get a second opinion. If the Dr. had even TRIED to acknowledge my symptoms, that would have helped, but he basically dismissed me and said to come back in three months. I even told him that his nurse said, "I don't normally tell people if I notice something, but yes, your foot is really apparent and I hope you get some answers". He just shook his head. I'm going to do what will set my mind at ease, and try and seek a second opinion. From what I've read, that seems to be a normal thing to do. If two totally different doctors can agree on my situation, I will have my mind put at ease. Right now it's not. I was handed a bunch of paperwork on BFS and sent on my way. I don't know if I need a referral to a separate specialist, but I will try and get in to one. Even if it's not ALS, you'd think he would at least attempt to look into what's going on.

 

[awieleba]

missy~

I would go get a 2nd opinion. I did, and I went to an ALS specialist. I want to see someone who works the disease and treated people with it. I felt the way you did all last year. It made me so mad at being dismissed when something had taken over my body. They told me to come back in 3 months. You feel like 'what the he**'! But my ALS doc did everything and every test she could, including muscle biopsy. It was all clean, so what is she going to do? I made sure to ask her about mito diagnosed, myopothies, and pma, you name it. She was familiar with them all. I mean my hand is bad and rheumy said he felt I had atrophy b/w thumb and finger but when they stuck that needle in the spot it was clean. What to do. she said mixed connective tissue loss. It is hard to accept the wait and see mode, but if you dont have umn signs and lmn, then they cant diagnosed ALS. And ALs specialist will know if what you have is truly ALS atrophy. I understand everything you feel. I was just trying to help because I have been there.

You may wonder why I still come on these boards if it has been ruled out? Well, I do stay off and then I dont. There are 3 reasons really. 1. I want to help reassure some people that are nervous, as I was there. 2. I wonder if someone will find out what they have that is not als and is like me. Since I have progressing sx and no diagnosed, I am always on the look out to see if any get some answers. Some have, and they have been things like lupus. or other issues. And I stay in touch with other un-diagnosed people that dont post but are still here to see if they get a diagnosed or just to stay in touch with them because I have grown to care for them. AND 3. Yes, I do feel very nervous that something sinister is happening to me. Most of the time I feel that I dont have ALS because I was told that I dont. At other times when my sx are bad, I wonder what else could it be. like a super slow progressing form of MND. I asked my als doc if she ever saw anyone present with my sx like me and then go on to have it and she said,never. And yes, I do know of a few people that had clean emgs after sx started and went on to get an als diagnosed. BUT, I dont know their whole story or presentation on clinicals. I know what they thought and what they told me. Some went to local neuros that were not even familiar with als to begin with. And even when their emgs where clean and then after had some UMN sx developed, like babinski, hoffmans, jaw jerk, hyperflexia and gait problems. ANd then got an als diagnosed within 2 yrs. or so. I think time is what will tell for me. The longer I can go with clean emg and clinicals, then that is good. Same with you. I mean there are times when I am twitching so bad that you can see it through my jeans, my muscle in hands and feet are shrunk. My limbs jerk, but not as bad as last year. I have hard time even keeping my flip flops on this summer, and I bought them a size smaller. When I swim my hands feet will cramp sometimes. I dont get cramps normally though, thank God. My neck hurts EVERY day. But, I dont have any answers. I get what you are feeling more than anyone! But I just want you to prepare yourself that you may not get any answers and just have to get on with it. It was hard for me and still is. I am just trying to help you feel a teeny tiny bit better, thats all. Good luck