A Visit to Forbes Norris ALS

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GHayes420

Well-known member
I am fortuante enough to be able to be seeing one of the nicest, most reassuring ALS clinics that you can see. I have been seen by Forbes Norris ALS clinic now for the second time. The first time I saw them on 5/22 after nine months on constant bodywide twitching. He told me his honest opinion on BFS and about the cases they have seen. He said I am most definitely benign and he gave me an EMG (totally clean) on my right side and tongue and I left a changed man. Fully believing that this is benign and living high on life for a while.Then came the hotspot. And yes, I feel mine is special. At the end of May I started getting this twitch in my left bicep. It is a constant thumping that goes all day and all night. It is going while I type this, I dont know of one time that it has paused for longer than 30 seconds. It is actually working the muscle itself so hard that the twitches hurt at times there. I worked out very mildly. Now that muscle only, none other on my body, is extremely sore to use and touch. The twitch is very unnerving.SO on Thursday I said enough is enough and I emailed my doctor. He said her wanted to see the twitch himself and told me to come in that same day. So I did. And I got right in. He was easily able to see the twitch in my bicep. He said that is not ALS twitching, that is benign fasciculations. THis doctor speaks to me as a person on my level. He said he still thinks it is benign and it is common to have fasciculations that stick around in one spot and then move. He asked me what I wanted to do in order for me to believe it. I demanded an EMG in that bicep. He took me right into the room and fired up the machine.When he stuck it into my bicep, they saw fascicualtions. There were also a few small fibrillations. He knew that I knew what they were and I start to panic and cry (like a little girl, it was sad to see). He said, "no, no, no, relax, relax. These are not ALS fibs. I most likely hit the root end of a nerve, you said your muscle is sore, it may be torn from you exercising it yesterday." So he pulled out the needle and stuck it back in a different spot. There was no fascics and one single fibrillation. He said the amplitude of the fibrillation is too samll to be denervation from ALS. I told him that I did not believe him and he knows more. He says, "Greg, ALS does not work like this. It doesnt start JUST in your bicep." So he did further EMG testing. He said that if there was denervation from ALS it would show in shoulder deltoid (which he EMG'd and was clean) and also in the thenar muscle on that arm and also at this certain spot on my forearm. So he did all those spots and they all were fine and clean. So he says, "See, you are ok." And I said to him, "But this is not then a 'clean' EMG?" He said, "I am writing it up as a normal EMG study." He said that it is not ALS, he guarrantees its not ALS. I (jokingly) told him to put that in writing. He (surprisingly) said that he would if that would help me. So he walks with me out of the building to the front and talked with me outside a bit longer about BFS and how he sees it ruin certain peoples lives and he said that he liked me (hard to believe I know, he is a sports guy too and likes beer) and that I was welcome to email him and talk to him as often as I want in order to get over this worry or "phobia" he called it, about ALS.So that was yesterday and today I am twitching almost harder than ever. all over my body including my left bicep. It feels like it has been pulled or strained. I also have a new twitch in that very hand that was EMG'd in the thenar, but the twitch is constant in the hypothenar. My twithcing is progressing and I am reaching the most intesnse period yet. I have one of the leading specialists in the nation telling me its not ALS. So basically I would have to have a mental condition of some sort to not belive him.I hope the above example of extreme twitching and extreme paranoia can prove to others that even in the most intense cases, this still can be a benign condition as well. It made me feel better just to type this out and remind myself just a day later, what i was told yesterday. Have a nice twitchy day!
 
they say what doesn't kill you makes you stronger. with BFS it makes you nuttier. than a fruitcake. at times. Wish there was a miracle drug for this, but don't think that is to be.
 
greg, you have had quite a journey. I, like you, am having a hard time with this as well. I'm not sure what it takes to get to where others get. I hope that you can find that peace and that i can too. Like you i feel like every new thing is a disaster. I'm glad to hear you have this guy in your corner.timm
 
Your doc sounds amazing Greg. I hope you can trust him enough to try and move forward from this. He is right. You don't want this ruining your life. Glad you got some reassurance.
 
this is great to hear all details Greg! Deltoid is fking with me right now! and after seeing ur post I'm scared out of my mind. My deltoid keeps twitching a single fire twitch same spot! Not all day but in and out! Zim scared shtless now! Actually my right arm (deltoid) now just did the same!
 
Hi Ash, I am sorry my post made you scared, if anything it was meant to be reassuring, but I am told I am miserable at doing so.Regardless, your deltoid twitch does nothing to scare me at all and would be absolutely nothing that would scare my ALS doctor buddy.Sorry, but you are just an anxiety nut like the rest of (most) of us. :)You'll be just fine Ash!
 
so good to have supporting doctor explaining everything...sad to hear about your hotspot - and I too was for two month almost free of twitches and after some lawn moving - hello! SMALL (few hours) hotspot in the bicep of the left hand - and hello, all left side is twitching, sore, the shoulder joint aching so i barely could withstand my hair touching it...the mind is crazy thing. BFS is annoying!!!!But we will survive.
 
I was in a similar boato to Greg, constant twitching, fears of you know what, then I got a clean EMG and clinical and was ok for a while, then I had a thenar muscle twitch in my left hand for 4-6 weeks, going every day, and since previously my twitches were more random and didn't really settle on any one particular area for long, i got freaked out again, it kind of went away after a while - I read various accounts of people who had troublesome twitches in places like the thenar for as long as a year and more, again i was a case of my mind being drawn to the tiniest of possibilities rather than the general probability, we must train our minds to focus on the probability - there is no certainty or guarantee in life so that's all we can do, unfortunately some poor bfsers go through periods where the let their minds basically destroy their lives out of fear of something that will destroy their lives (that the probabilities say will in 99.99% of cases not affect them) - it is sheer madness, but it's hard to see logic when you are trapped in the steely grip of the neuro health fear but logic will win in the end and we'll all be fine
 

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