My final post here regarding nonstop fascics in one spot, no other forums can help answer

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Seanblock

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Hello-

(video in link- link removed, broken)I have had "bfs" for 16 years. Last November I started having waves of fascics in my left upper arm between my bicep and tricep. They never stop, never take a break for one second. I've never seen a benign person have these. Is it possible to have a fascic that never stops and is benign? To me it seems based on what I've read over many years it's not likely. Day and night, need stops for one second. Video is attached. If you look at the center of my arm, you can see it just moving nonstop.

Thank you
 

lgelb

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As per your last thread, you were scheduled for an EMG in February. What did it say?

I don't think the issue is whether you have ever "seen a benign person" with fascics like these, but whether there is any evidence that yours are not benign. 16y is a long time, so we've established that you're a bit of an outlier to start, meaning that how your BFS manifests and progresses could be out there as well. Still doesn't make for a reason to worry about ALS -- fortunately!

Best,
Laurie
 

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Hi Sean,

The last time you posted, you were asked to stop by when you had an emg.
This has been going on for over 15 years now? This seems more like a scratch at the reassurance itch than a genuine need for information about ALS.
 

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Honestly you need to be clinically examined and work through this with a doctor, we truly can't do anything. No weakness still after all this time, and it isn't something we can help with. Whatever it is, only a doctor can sort it with you.
 

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Hello-

My neurologist did a full emg on my left arm on February. She said she saw no evidence of disease, but if the constant fascic didn't stop to call her in a few months. I did early this month, and she wants me to see the head of the ALS clinic at OSU (Ohio State) Dr Kolb. My appointment is June 24th and I'm just scared, I'm sorry. She said it was a good sign the emg was clean, but she is concerned why it hasn't stopped. She also tried me on oxycarmabizine and it didn't help.
 

Clearwater AL

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Sean,

"She said she saw no evidence of disease."

"She said it was a good sign the emg was clean,"

It's not ALS.... give your brain a break on that part.

Still... post the Summary/Conclusion at the bottom of your
EMG report. That would be helpful if you post again.

PS. After 2.5 years then a clean EMG this past February...
Take it !!
 
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lgelb

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I understand her wanting to refer you out just to dot the i's, but the proof of ALS is in the pudding, if you will, i.e. a loss of function. I am sure your visit will be reassuring.
 

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Sean, for 16 years, 16 whole, long years you have been trying to get an ALS diagnosis. You've had 11 EMGs, countless clean clinical exams, and no ALS symptoms to date. May I ask, why are you focused on this particular disease? To date, you focusing on ALS hasn't worked out so well, has it? I ask because before you know it, it will be two decades of your life gone where the focus has been on a disease you don't have. That is time you cannot get back. That time is gone, history, never to return. I understand you've (only) been posting here for 6 years, but reading your first post seems like you've had a much longer relationship with thinking you may have ALS.

What can folks do to convince you you do not have ALS. What words do you need to hear? I'm not trying to be dismissive or combative, but merely trying to find a way for you to be able to live a life free of this fear of a terminal illness. The worst kind yet. Have you sought counseling in the past? If so, for how long did you attend? Things like having an illness disorder takes a lot of work and time to get to the other side of. I encourage you to try again.

It would be sad indeed to think of you worrying about ALS in another couple of decades, making it nearly 4 decades in all that you worry about an illness you do not, thankfully, have. If you get this 12th EMG, and it clears you once again of having ALS, will you please believe it? I know you want answers as to why you are having non-stop fasics, but that answer doesn't have a link to ALS. I hope you can believe your next EMG, once and for all. Do let us know the results.

Take good care.
 

Clearwater AL

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Gee, we had a guy a few years ago who posted about as persistent as you have,
numerous Neurologists and EMGs from each.

NO ALS.

After many questions and asking and asking he finally broke with the truth why...

He hoped to go on SSDI and cash in on some insurance policy that had a
terminal diagnosis clause. Then... he wanted to go retire on the beach.

He got banned.

Just a story from the past. :)
 

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Sorry I had to pay to reply, I apologize.

Here is my story.

I was a member of the aboutbfs.com website since around 2006. I joined shortly after my first neuro (who is a neuromuscular specialist) told me he had never seen someone with fascics and cramps so bad, he wanted to follow me for a year. He did 4 emgs during that time. After a year he said "I don't think you have ALS, it's more CFS but the most severe case I've ever seen". I then became a helping member on that forum.

Once there was a Facebook group for BFS I joined, and after my fears died down I actually was the admin of the group and then a moderator. I have NOT worried about ALS for 16 years, I actually have been helping people with BFS FOR 12+. My worry didn't kick in until 2016 when I started having tongue fascics. My neuro then referred me to Ohio State. They ALSO were saying my case didn't fit typical CFS and they wanted to follow me and do repeat emgs. That's why I've had so many, the ALS neuros wanted them. The co-director of the ALS clinic said my tongue fascics were "suspicious" and did several tongue emgs and an ultrasound. He said "I think you are ok for now, but we want to keep waching you". So they put me with a neuromuscular specialist. She emged my arm after it's been going for months and now wants me to see the director of the ALS clinic. See why I'm concerned?

I am very well off and have ZERO I need to gain from this, I am worried about the future for me and my family. I work from home in Finance for a large technology company, and I want to help others who have benign fascics, I've been doing it for over a decade. This instance I was just worried, the group I moderated 5,000+ people never had anything like this, so I didn't know where to turn. I asked the neuromytonia and Isaacs group and they had never seen it either.

I have nothing to gain, I'm just looking for answers since I don't "fit" the typical BFS presentation or symptoms per Dr Adam Quick (ALS neuro). Dr William Mayr (Neuromuscular specialist that trained at MAYO) AND several other ALS specialists at Ohio State.

Thank you all so very much for your time, sorry OSU does not give me my EMG reports. I have even requested them twice by mail and nothing ever came. No clue why.
 
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TippiLeigh

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@Seanblock I’m so sorry you’ve been going through this for so long. I’m glad you’re connected with what looks like some good neurologists. All you can do is keep working with them and hopefully they can give you some relief, whatever the final verdict is. My neuromuscular neurologists at both UCSF and Stanford talk about motor neuron disease as more of a spectrum, rather than separate diseases and that no two people ever present exactly the same. Not to say you have motor neuron disease, but to say that while there are classical presentations of it, there is much more of a wide spectrum of how this disease affects people and no one here is qualified to tell you one way or another if that is what you have, because it varies soooo much from person to person. I’ve now met PALS that had twitching for years prior to getting ALS and I’ve met PALS that never felt one twitch until they were well into the progression of their disease. But even neurologists refer to each other for second opinions because this stuff is HARD to figure out, especially with very limited testing. Hang in there and keep advocating for yourself.
 

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Hey Sean,

While it's clear you don't have ALS, there are all sorts of weird muscle and nerve issues that can come up and some people can search for years for answers. Sometimes they find those answers, sometimes they have to wait for years for something to "click", and sometimes they never do. Not knowing sucks and can cause all manner of stress and upheaval in a person's life. If you have a read of the list of things that can cause similar symptoms to ALS in the "Read Before" post, you will find a small percentage of the wild conditions that can affect people.

What is happening here is that the people with ALS on this forum, for whom it exists, aren't able to help you with those answers, but you are asking anyhow. You've been around the block now- BFS forums, groups, etc- and know how these things go. This part of the forum is very basic and exists only to provide answers to a few questions before people move on to where they will get more appropriate help. We can't deal with the really rare stuff. We're not doctors, nor are we a broad "weird neuro stuff" support group. There are a few of those on FB and reddit you can maybe check out.

Another thing to look at, and this is in NO WAY a dismissal of your symptoms or experience, is to find someone to help you with stress while you look for answers. You deserve support- but we simply aren't qualified. We're just a bunch of folk struggling with MND and caregivers- and we come here for support ourselves.

Sorry you are struggling- not knowing is hard. Unfortunately, the answers you seek are not here- they are with your doctors.
 
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Clearwater AL

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Sean, from your last post...

"OSU does not give me my EMG reports. I have even requested them twice by mail
and nothing ever came. No clue why."

OSU has a web site "MYChart" where you can message your doctors, ask questions
and review your chart. I have it at Wake Forest and my Neurologist replies within
two days.

You are entitled to your EMG report... it's yours. You show capable computer skills so
Login should be no problem for you.

Even... call them on the phone. You'll probably have to climb their phone tree, listen
to crappy music while on hold, somebody will answer, they'll transfer you to another
department, listen to more crappy music. Oh yea, you probably hear several times...
"Please continue to hold." "Your call is important to us." "The next available specialists
will be with you shortly." Be patient, we all go through that now for other reasons.

But... you don't have ALS. There is really nothing here, anyone here can help you with.
Give your brain a break... log off this ALS Forum and try to stop reading about ALS
or reading old ALS testimonials.

I hope you find better health in the near future.
 

Seanblock

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Thank you! I have my chart, and they never post the emg results. How I found out about how to request them was I messaged my doctor through my chart and she said I had to call the office and they would email Mena form to mail in to request them which I did twice. Even their after visit notes are blank for me. Very strange, but after every test I've asked them and they say I'm fine. So I have left it at that.
 

Seanblock

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Thank you so very much for your time, and yes I'm working on my mental health. After this started I asked my neuro to work with me on anxiety meds. I appreciate your time so very much!
 
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