My Second Neuro Visit

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My Second Neuro Visit

Postby elliottok on September 2nd, 2014, 3:04 pm

All,

Today I had my second neuro appointment, this time with the top ALS Specialist in my state (Oklahoma) - his name is Brent Beson. This guy diagnoses 5-6 cases of ALS a week and sees more ALS patients than any other doctor in my area. So, bottom line, he knows his stuff, which is why I wanted to see him.

First off, this guy is great. If any of you are in the Oklahoma area and having neuro problems I highly recommend him. Very friendly, understanding, and really takes his time to listen to you - something a lot of doctors don't do. When I walked in he asked me what I had been going through and I told him my whole story and symptoms. I explained how much anxiety this had caused me and he was extremely understanding and acknowledged how twitching can really ruin your life if you let it. After I told him everything he said "well, I'm going to look at you, but I can tell you that based on your history - 10 months of twitching and no weakness - I don't expect there's anything wrong with you. There's pretty much no way you could be having motor neuron issues for 10 months without some sort of progressive weakness rearing its head. Another thing is that most patients with ALS don't even feel their fasics. I don't know why - I personally believe it's because ALS is more of a system wide illness than is commonly thought and that it affects the brain causing some sort of apathy making patients unaware of their twitching. A big red flag to me is when a spouse is the person who notices the twitching before the patient does - and I see that quite frequently in my ALS patients. Anyway, let me have a quick look at you and then we can get you back to living your life."

He did a basic neurological exam - tested reflexes, had a look at my tongue, had me walk across the room on heels and toes, tested strength in my hands, arms, legs, etc. He then had me sit down, stuck out his hand and said "You're 100% fine - go have a beer and live your life."

He was completely unconcerned with my twitching - didn't even want to look at any twitches I was having. And I did have some during the exam that he saw. He said he sees about 2-3 cases of BFS a month. I asked him "are these people who have twitching all over?" he said "Yep." For those wondering - he was also completely unconcerned about my tongue twitching. He said there's nothing different about a tongue twitch than any other twitch.

Hope this gives some reassurance to some fellow twitchers out there.

Elliott
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Re: My Second Neuro Visit

Postby RGB on September 2nd, 2014, 5:16 pm

elliottok wrote: So, bottom line, he knows his stuff


Thanks Elliott for this great post. Here is a real expert (not some random dude on an internet forum!) telling it like it is -- if it is just twitching then it is almost certainly just twitching.

elliottok wrote: Another thing is that most patients with ALS don't even feel their fasics.


I've also been told this by an ALS specialist in the UK who said it was the most reliable 'rule of thumb'. Just to stress though for those here who don't feel their fasciculations : Feeling twitches strongly points away from ALS, not feeling twitches does not point towards it. Just like all great chefs are men but not all men are great chefs :)

RGB
My history....Jan '13: Widespread Twitches. May 13': Unremarkable Neuro Exam. Jul '13: Clean EMG. Oct '13: BFS Diagnosis Today's Date: Twitching and Healthy!
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Re: My Second Neuro Visit

Postby Pascal35 on September 2nd, 2014, 11:28 pm

Hi elliottok,

Very nice post.
I am also 10 months into this situation and had several reassuring Neuros appointments and clean EMGs.
I am 36 and i guess we are exactly on the same page.
The way this doctor has dealt with you shows high confidence and great professionalism. This is a great way to "believe" a doctor and move on...
I hope this will help you and will also help others in the forum.
Your description is also very nice, as it looks that you are bringing in the real picture and not some imaginary and worthless information

Well done
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Re: My Second Neuro Visit

Postby Yuliasir on September 3rd, 2014, 1:10 am

this apathy he mentions is what really makes me wondering - I had read several reports where people had already paresis of a limb and well developed atrophy but still were reluctant to go to doctor...believeing it is 'an old trauma' or something like that, and hoping this would resolve somehow...

however I know also that we are often reluctant to note real (not perceived) signs of really serious diseases (not only ALS) and taking care about perceived ones, maybe because we want to hear 'you are ok' and not 'you have cancer' or 'you have ALS'

I think it is pretty normal that the doctor did not want to have a look on twitches becasue he did not find any neurological deficites on the basis of clinical exam, and twitches itself are just quick muscle contraction and have a little if any diagnostic value. Your reflexes do have it, your strength does have it, your ability to pass clinical exam does have it, but not twitches.
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Re: My Second Neuro Visit

Postby veryworried123 on September 3rd, 2014, 11:12 am

Thanks for the post and notes
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