Neurologist's confusing response after EMG

[Treg]

My father just had an EMG by a neurologist who told him last week that he suspected ALS after observing tongue fasciculations in addition to his other symptoms. MRI clean. MG & Lambert Eaton, MS ruled out as well as Friedriech's Ataxia, which his brother had and died from.

Quick back story. My dad started tripping and stumbling last year. Has a defininte gait disturbance. Ended up being sent to a neurologist following a sudden and sever case of dysphasia in March. Could not swallow solids or liquids for three days and has not eaten normally since and now has dysphonia, too. He has always been active and healthy and is still working at 71. For the past six weeks he has only left the house a few times because he says he feels so exhausted.

So at today's EMG, the doctor tested his tongue, back, arm and leg. He observed mild denervation in all areas but it was not as progressive as he expected. So, ALS was not as high up on the list but was still a possibility. He could not tell us anything definitive and needed run more test. He told us we could relax a little until we know more. So while we left feeling incredibly relived, I'm a confused about why he didn't rule out ALS. Isn't the EMG pretty black or white when it comes to ALS? (Btw, his nerves are firing fine, which seems very good, too).

Any thoughts are appreciated.

 

[Atsugi]

There is no single test for ALS. You have to test for everything. When it isn't anything else, only then is it ALS.

Even the EMG--our "gold standard" test--is only part of the picture.

ALS is rare. Don't get ahead of the doctors. Good luck.

 

[Treg]

Thanks Mike. I really appreciate your response. And I do understand how rare ALS is, which is why it wasn't even on our radar until last Monday when his neurologist expressed his concern. Seems rather unprofessional to do so prior to completing additional tests. Wondering if we need a different neurologist? Just feel so helpless watching my dad deteriorate.

 

[lgelb]

Treg,
We always recommend a 2nd opinion in the case of any life-changing disease. So whatever the outcome of the additional tests, it's advisable to go elsewhere for another set of eyes.

What center was this equivocal EMG at and what further testing is being recommended?

Best,
Laurie

 

[Treg]

We are in Southern, CA and saw a general neurologist at Memorial Hospital in Fountain Valley (Dr. Carrillo-Nunez).

Tomorrow my dad is scheduled for a video swallow test with a speech therapist. The doctor also ordered two more MRI's, one c-spine and one of the face. And a CT of the chest. He was a smoker in his younger days, so he wants check for SCLC, which can present with neuromuscular symptoms. He did have a clean chest X-ray in Nov. when he was hospitalized for the first time in his life by a sudden and severe case of bronchitis. When he gets sick, all of his muscular problems are greatly exacerbated. The neurologist also said he wanted to run some more specialized blood labs that were expensive and would require more documentation to get approval from his insurance. Not sure what these would be.

Last, the neurologist did try to send my dad to UCI or Cedars, (both nearby teaching schools) for a second opinion but his insurance won't approve it without further documentation.

Again, thank you for this site. My uncle died of a rare neuromuscular disease (Friedriech's Ataxia) at 50 when the Internet was in its infancy. I remember trying to do research for him the old school way. He would have taken a lot of comfort in being able to connect with other people with FA.

 

[lgelb]

The tests sound on point. The fluctuating pattern certainly fits lung cancer better than ALS -- not that we would hope for either. Let us know what comes of the further testing.

 

[Treg]

He has a follow up on the 28th with his neurologist, at which point the next round of tests will be done. Today's swallow test showed weak muscles causing problems in the pharyngeal stage. Liquid / food just seemed to pile up on the flap over the airway and he had to swallow two, three times to get it down. Choking / aspiration risk. Kind of crazy to watch. The simple things we take for granted.

Trying to be patient, taking it a test at a time and enjoying my dad. (He wanted Mexican food after the test...no chips but he did fine with the burrito!) I'll post an update after the 28th.

 

[Treg]

Spoke with my dad's neurologist today, who told me he put in another request to get a second opinion. The first was denied, but now that the EMG was abnormal, he got approval to go to the MDA ALS Neuromuscular Center at UC Irvine Medical Center, which is nearby. I still haven't seen the EMG results, and wouldn't understand them if I did. I can tell my dad is scared, and I hate not being able to help him. For the past few days, he hasn't had an appetite and is barely eating, which I assume is stress related. Has anyone here been to UCI?

 

[Treg]

Saw neurologist today. All tests (CT of lungs,MRI of face and C-spine) came back normal. Based on clinical symptoms and EMG, he said it appears to be a diffuse motor neuron disease. Today he had him try to walk on his heels / toes. He could barely walk on his toes but not his heels.

He contacted the head of the ALS research center at UCI and was able to expedite my dad's first appointment. (We were still waiting for a call back just to set up the appointment.) So we'll see Dr. Mozaffar on Monday. Everything is moving so fast and so slow at the same time.

Neurologist’s summary: NCV of the above nerves showed normal latencies, amplitudes and conduction velocities.

Needle EMG showed: Few acute and chronic denervation potentials on both trapezius muscles, right tibialis anterior, left brachioradialis, and in left>right side of tongue muscle. In summary this test suggests a diffuse motor neuron disease of early onset or mild at this time. Clinical correlation and close follow up recommended.

Holding out hope that this could still be something else. My heart goes out to all of you here.

 

[gooseberry]

Treg, MY husband was diagnosed quickly once the process started. It seems like a freight train coming at you....just breathe, try to learn as much as you can tolerate, and know you truly have no control over his diagnosis and disease. I can tell you that counseling helps for anxiety and stress you and your dad may be feeling.

If your dad is not eating it could be because he is scared to ......thickened liquids like protein smoothies are often a good choice. A greek yogurt, fresh fruiTs or frozen, almond milk, blended really well can provide calories . If he cant tolerate dairy, you can use a protein powder.
The goal is to get sustenance in him because you dont want him to lose weight. Some people make crockpot soups and blend Them....or cook food to a very soft consistancy and mash it. You will need to talk with your dad and his doctor because they may want to place a feeding tube if his aspiration risk is high.

 

[Treg]

My dad just had his second opinion EMG at UCI ALS MDA center. This time the test was administered by a specialist and overseen by two neurologists. All three experts agreed, he does not have ALS. The first EMG (conducted by a general neurologist) was inaccurate, so it does happen. The last four weeks have been long and terrifying. I wanted to say thank you to those who responded to my posts (Mike, lgelb, and Gooseberry). I'm so sorry you all lost a loved one to this disease. I've read your posts as well as many others, and your stories have touched me in ways that are difficult to articulate but I won't forget them. My dad is still very sick with debilitating movement issues, so there is more testing to come, but I'll leave here with Mike's advice, which has helped so much: "Don't get ahead of the doctors."