Clean Nuero Exam is that enough?

[PharmD]

I went to the nuero she did all the strength tests, i was negative for clonus...hoffman and babinski were both normal...has anyone passed the nuero exam but then gotten an emg indicating als? She gave me the option to do an emg for my reassurance but she does not think its necessary. Do yall recommend it?

 

[ottawa girl]

If after examining you, your neuro told you, based on her expertise, that an EMG is not indicated ..... who am I to second guess her?

You have a PharmD? Studied years?

So, say I'm your client and I seek your opinion and you tell me about a contraindication... you think I should believe you or poll non PharmD's?

 

[vickim]

Can you accept the dr's decision on no als? If its no and you still have the fear in your mind, then have the emg.

 

[goolia75]

In my opinion, a neurologist is a very thorough doctor and when it comes to als, they are not going to tell you that you don't have it if they believe there is a chance you do. I have been misdiagnosed by doctors before but not for a fatal neurodegenerative disease. If she says you do not have it based on your exam, you are probably safe. Congratulations to you! Have a great day.

 

[SquantzMemory]

I'm sorry to relay my experience but you need to realize the possibility may still exist. The first neurologist my wife went to believed there was nothing physically wrong with her. For the next several months no doctor could find anything wrong with her neurological tests or even the EMG. Yet 14 months after the very first symptom, she was gone from ALS. Live every day to the fullest and never take your loved ones for granted. Good luck.

 

[TeresaElizabeth]

Squantzmemory... You truthfully just scared the fire out of me. If you are going to make statements like that you need to tell everything not just "my wife's dr believed there was nothing wrong with her... 14 months later she was gone". You should note her first symptoms... What did the Neuro say?! Did you seek a second opinion?! We're there any notes on her EMG?! How thorough was her emg?! how many limbs were tested?!I mean you can't go an be vague and leave the person who wrote this plus us worriers all scared. Truthfully being one of those who has this fear it's better to give all details.

 

[goolia75]

Squantz - I'm very sorry for your loss. Your vague post is probably going to stress some people out on this forum. How long after your wife symptoms started until she was diagnosed? What did her emg show? It takes quite a while after the first visit before a person gets a diagnosis because everything has to be ruled out first, so it does take quite some time.

If someone passed the strength test (which means they have no loss of strength) and had normal reflexes the odds of them having ALS are pretty slim. I was given a clinic exam by an ALS doctor and also passed all my strength tests. I have unilateral Hoffman's and hyperreflexia, but I was still told with confidence that I do not have it. 4 months later, still no atrophy. Neurologists are not 100% perfect all of the time, but I think overall they should be trusted, especially those who specialize in ALS.

 

[ottawa girl]

Squantz

Your wife's situation is unusual. Very unusual.

Please DIHALS - have faith in your doctors. Theresa, goolia, PharmD - please keep in mind that an exception is not the general rule.

 

[TeresaElizabeth]

Squants- I'm sorry if I sounded rude... That was not my intent. I am sorry for your loss. Was your wife Dx with bulbar onset?! It would explain a lot.

 

[monster]

Squantz-
I am sorry for your loss. Thank you for expressing your experience on your wife's diagnosis.

Your post did not make me scared. There are times I do get get nervous but I blame myself for not listening to my doctors.

I have symptoms for many years now. 2011 & 2012 emg's both showed fasciculations. 2013 emg showed none. All emg's were on both limbs.

I have a Hoffman, hyper-reflexia, & a Jaw jerk. All my strength test are normal and I have no atrophy.

I am told by 3 Als specialist (2 with over 30 years experience) I do not have Als or pls. They said I have just as much chance to get it as they do!

I can trust what they tell me or I can make myself scared. Today's a good day!

We all have that choice

 

[SquantzMemory]

I'm sorry. I didn't mean to frighten anyone. We simply have to understand that doctors and medical science are not foolproof. For those that wanted more detail:

My wife was seemingly in perfect health and 54 years old. Her first symptom was in September 2011. I noticed her speech was slurred. This began a series of exams and tests as her speech got worse, she was short of breath and began having trouble swallowing. As mentioned, her first neurologist thought her symptoms weren't real. My wife went on the Internet, typed in all of her symptoms and came up with ALS on her own.

We went to a neurologist that specialized in ALS and other neuro-muscular disorders and she performed all of the requisite tests including strength tests and EMGs which showed no abnormality. Meanwhile my wife's condition continued to decline rapidly. By March of 2012 she was officially diagnosed. At that time she could no longer speak at all, swallow or breathe without assistance most of the time, and suffered severe emotional liability. Since her 's was obviously bulbar-onset ALS, limb weakness was the last thing to make an appearance. She was also suffering from FTD.

By September 2012 she could barely walk and was tripping when she tried. She was on a cocktail of medications that kept her disoriented most of the time. She was tuned down for a clinical trial of the NeurX Diaphragm Pacing System (her FVC tests were too low) and she continued to decline. In November she was gone. ALS was definitively confirmed.

Again, I apologize for frightening anyone but sometimes you have to question the doctors diagnosis or lack thereof. I wish you all the best of luck.

 

[SquantzMemory]

I forgot to mention that her THIRD opinion came from the Mayo Clinic who merely rubber-stamped the SECOND opinion without doing any of their own tests. The Mayo Clinic was a horrible experience.

 

[Jeff Long]

PharmD,
Whether or not we 'recommend' the EMG should be irrelevant. What matters is what it will take for you to have peace of mind with whatever diagnosed you receive (if you get one at all!). That said, I have been in your shoes so, at the risk of sounding any false alarms, here's my (shortened) story.
Slurred speech and 'shaking' in right hand noticed in Apr 2011. Went to my PCM, who ordered MRI/CT, etc to check for stroke, MS, Bell's Palsy and whatever else. Tests all negative, so off to the neuro I go. In the meantime, noticed I got muscle fatigue quickly and with seemingly little reason. Anyway, neuro does the in-office testing in Aug 2011 and all is 'normal' WRT reflex, strength, tone. Schedules the EMG at his office (done by a tech who comes in bi-weekly) and a month later he reads the results and says "I don't know what you have, but it isn't ALS. Come back in six months." My PCM wasn't comfortable with that (neither was I!) so we got a referreal to UNC hospital for another neuro exam. Same strength and reflex tests, same results in Oct 2011. This guy; however, saw the fasics in my arm and tongue (which was wigglin' like a demon in church!) and ordered another EMG that he did himself a week later. He read the tests for about 30 miniutes and came back with the most unpleasant diagnosed..."Bulbar onset ALS."
So, not saying your second opinion will go the same way, but I decided to seek a second opinion for my peace of mind. And, no matter if it had been negative (how I wish!), the time and money would have been well spent for that reassurance.
In the meantime, whatever you decide, don't borrow trouble! Make your decision and rest in it until you have an answer.

 

[Clearwater AL]

I believe a second opinion (at least) is a must. Just a thought... they say just 5,000 people are diagnosed with ALS a year. Ok, divide that into the number of neurologists there are in this country and I'd say there are many neurologists that have never actually had a patient with ALS. Maybe the 1st question to ask on your 1st neuro appointment is to ask... "How many cases of confirmed ALS have you diagnosed or treated?" Hopefully you'll get an honest answer.

 

[JEB1979]

For what it's worth, my neurologists said they didn't think there was anything wrong after I passed all the reflex tests but scheduled an EMG anyway. The EMG was normal, but they didn't do a nerve conduction test.

A few months later, I saw my regular doctor and after I told him my symptoms, he scheduled me for an EMG with a nerve conduction test. That test found sensory-motor neuropathy. Now I'm back to where I started and scared witless.

Get the test done, if only for your own peace of mind. That's just my advice. And make sure they test all your limbs thoroughly, as well as do the nerve conduction test which is SUPPOSED to be done together with an EMG, but which my initial doctor skipped.