Update on Widespread Fasciculation and EMG

[findinghope]

On 9/9 after an EMG where he found "Mild Denervation" our first Neuro diagnosed my husband with ALS (No clinical Weakness, no Hyper-reflexivity). We were sent to an ALS "Expert" Neurologist (A Dr. Barkhaus at Froedtert Hospital in Milwaukee, WI). He did an exam and found no clinical weakness, no hyper-reflexivity and also thought our first neuro's EMG results were within the normal range).

He asked to do his own EMG as a follow-up which we did this past Friday (10/3). His EMG showed normal results except for a "minor complexity" in one bicep muscle, which he thought was of "no significance". He does want to follow-up with us in January.

My husband is experiencing WIDESPREAD SYMETRICAL and CONSTANT FASCICULATION since Mid-July. I have seen a handful of cases where this was the first sign of ALS, but they don't seem to indicate whether they were accompanied by other symptoms (i.e. dirty EMG, weakness, hyper-reflexivity). My husband is still VERY scared - as the neuro has not 100% cleared him, but told him to go home, de-stress and try to relax and we'll see where you are in January...I think that added to my husband's stress. Any commentary on those cases that did begin with widespread fascics? Were they symptomatic in other way as well? Trying to be as informed as possible and also assuage his fears if I can or prepare him.

 

[affected]

That's such great news, thanks for updating us!

Twitching without clinical weakness or all the things a neuro looks for on an EMG is no cause for concern. Maybe you would now find it really useful to join a BFS (benign fasciculation syndrome) forum. You would find lots of people there with your husbands issues.

When people fasciculate due to ALS it is because the nerve is dying and this shows on the EMG.

All the best

 

[Dusty7]

Your husband got a "clean" EMG.

A "'minor complexity' in one bicep muscle," is in my mind not enough to make it dirty for ALS purposes. Checking to see how your husband is doing in January is simply good, conservative medicine. ALS fascics are not widespread until the ALS is. ALS fascics are not symmetrical because ALS is not a symmetrical disease.

As I mentioned to yourprevious thread, ALS is a disease of widespread, acute and chronic denervation and that is one thing the EMG must show, not just mild denervation but widespread acute and chronic.” Your husband’s EMG was far from showing widespread denervation.

I think you and your husband should go and enjoy life and stop worrying about a misdiagnosis or incorrect WAG (wild ass guess) you got from a previous doctor. Follow up in January, but that is not something to worry about. I’d say his EMG kicked ALS way off the table.

 

[Atsugi]

FindingHope, You found more than hope. You found a competent doctor.

Tillie and Dusty are right. Congratulations on a clean EMG and not showing any signs of ALS.
The twitches can be something else. Something else is NOT terminal, nor totally paralyzing.

I re-read all your posts. I always thought your first doctor was either young or trained in Guadalajara. You just don't diagnose somebody without signs. EMGs contain a lot of information, but they are not like X-rays where you see a break and go "there it is." EMG's are complicated, and only one tool of diagnosis.

A 52-year-old man is going to have some degradation in his nervous system--we are, after all, literally halfway to death and beginning falling apart. Active life styles take their toll on a man's EMG. It takes an expert to properly read those things.

Your doc took two hours for good reason. (My wife (RIP) was a doctor for 20 years.) There a lots of things she has to look for. There are so many "signs" of ALS that I can't list them all. They would go through her mind as she speaks to you, touching you, watching you for signs and symptoms. Most of what a doctor is thinking, they don't say out loud. Doctors occasionally mention something, just to keep up conversation, but they're not going to share their thought processes, because you'd need to graduate med school just to keep up. I'd trust your second doc, that said no ALS.

Look up Benign Fasciculation Syndrome, I think. And notice it says "benign" not "terminal paralysis."

Follow up. In the meantime, rejoice!

 

[Mediasmart]

I would opine that no hyper reflexively in the presence of neuropathy is a very thorny issue.

 

[cheerleader]

Mike, what a description that being in your 50's is "halfway to death and beginning falling apart!" Yikes! (Probably because it's true!)

 

[MaxEidswick]

> In the meantime, rejoice!

Ditto that!

 

[findinghope]

Thank you all so very much for your patience and your thoughtful responses. I will continue to be optimistic and learn more about BFS vs. ALS. My husband has chosen to stay as "uneducated" as possible about either disease for fear it will cause his mind to begin to "see" symptoms where there are none, so I have done most of the research. I know typically ALS is NOT Symmetrical nor widespread twitching, however, as Ice Bucket has taken off, so have stories of odd cases that began with nothing other than twitching and rapidly progressed. Unfortunately, one of those cases actually happened near us in Madison, WI and the husband killed his wife and sister-in-law. The media only stated he had widespread twitching that began in a bicep. This is either very inaccurate reporting, or an outlier case, which is concerning. I'll choose to believe you and our 2nd neuro. Our specialist did state that our first neuro must be "smarter than me" for figuring out ALS as quickly as he did. Unfortunately, my husband in his state of mind took that as a true statement and not sarcasm, which I think it surely was. Praying we continue to have no other symptoms and learn to deal with the twitching....My best to all of you and many, many thanks!

 

[Bliz]

Findinghope: I have had fasciculations for more than 7 years. There are days where they are really bad and some other days when I feel nearly normal.
You say widespread, it is important whether you mean widespread as all over the body or widespread over the muscle (twitches in multiple places at the same time). The latter is said to be seen more with lower motor neuron lesions but it does not exclude BFS.
I have them everywhere but mostly in my arms, shoulders, chest and thighs. My examinations remain normal and according to my neurologist, the clinical picture is what matters, not one symptom. He agrees it is rare and odd but also says it would be extremely unusual for it to be ALS. Not impossible, but highly unlikely.
As for that ex-police officer with ALS in Madison, I have read he had twitches in his arms followed quickly by slurred speech.

 

[findinghope]

Bliz, his fasciculations started mid-July following a viral infection in his right bicep. Two weeks later after taking magnesium as directed by his GP, they were in both biceps and trunk. By late August, they were somewhat constant and also in his chest. At his first Neuro appt., they were also observed in his both thighs and slightly in calves. He also has burning and Pins and Needle feelings in his lower legs and feet that can sometimes be started/stopped by moving his neck. His MRI (according to first neurologist) was clean, followed by what he deemed a "dirty EMG" showing mild denervation in his distal and proximal arms and neck. (I should add this was done on a machine he wheeled into his office). We saw an ALS specialist at Froedtert in Milwaukee, Dr. Barkhaus, who did an exam and saw no clinical signs and followed up w/a thorough EMG in the neurophysiology lab - where they warmed his muscles, etc. dedicated equipment - it seemed more logical and thorough. He found no issues except one small muscle complexity in his right bicep that he thought was of no significance. He wants to follow-up with us in January, which scares my husband ("why didn't he completely clear us?" he wonders)....I find it very comforting and pray everyone here and the "expert" are closer to the truth than the first neuro. I should add that my husband does not deal well with stress and we have had a very hard few years - his mother suffering from advance alzheimers, a father that we are sole caregivers for who is aging rapidly as well, two small children and I have degenerative kidney disease which has sent us back and forth to Mayo Clinic 4 times over the course of the spring/summer, as well as a very demanding job. Maybe it's naïve, but I'll choose to believe it is stress until someone proves to me otherwise....and I'll pray for all those actually diagnosed and suffering from this devastating disease.

 

[Atsugi]

Bliz, this is not a general health discussion forum. If you don't have ALS and you're not caring for someone who has ALS, why are you here?

 

[Bliz]

Atsugi: for the same reason other undiagnosed people are here. As I mentioned, my neurologist (leading expert in the MND) admitted that widespread benign fasciculations are quite a rare clinical encounter and that it possibly represent a motor neuron disorder that might or might not progress.
I do not understand why could I not reply to others in the same situation, like Findinghope..

 

[Atsugi]

Bliz, unlike almost all other websites, this forum is made of people dealing with the unique problems of dying from ALS. It's a highly specialized place. But more importantly, many of the responders on our forum are limited in their time and ability to communicate. It's difficult to type. Some use eye-tracking technology to type a letter at a time. They spend a lot of their most valuable trying to read posts, only to discover the poster does not have ALS. That angers them.

Let the people dealing with ALS talk about ALS here. There are plenty of other forums where non-ALS people can chat.

You showed compassion to FindingHope, who does not have ALS. Time to go give some of that compassionate to others, elsewhere.

You want to discuss other things, go to other places.

 

[Nikki J]

It is very very true that we do not want this place, not even this subforum, to become a dwelling place for those whose questions are asked and answered and ALS/MND is off the table.
That said if people choose to lurk quietly that is absolutely their right and their choice,though I think they would be better served by hanging put elsewhere. Much as this is a lifeline for those who are dealing with ALS it can be a weight dragging you down if you do not have ALS. I think it can poison your life. But again people must choose for themselves

When people without ALS start answering posts it is often ( usually) inappropriate but I do not think Bliz falls into that category. He posts rarely and usually appropriately to his own experience and knowledge

Sorry for the hijack findinghope

 

[findinghope]

Follow-up questions to "FindingHope"

Hello everyone! I've taken your advice and stayed off the sites following our "semi-clean" EMG on 10/3. I do have a few follow-up questions, though, and hope you won't mind helping me out. I apologize for starting a new thread...I'm not sure how else to post the new questions.
1) My husband has constant neuropathy (numbness) in his feet now. He formerly had intermittent pins and needles, but it has become relatively constant. Do you know if this is consistent with this disease? The neurologist dismissed it. His feet seem to be working fine.
2) Life Does Not End with an ALS Diagnosis - The ALS Association This man's story is very disconcerting to me. He sounds exactly like my husband with the widespread twitching and rapid diagnosis, followed by a more conservative specialist. As you know, my husband has the widespread fasciculation, but no clinical weakness, no hyper-reflexivity, one neuro EMG that indicated mild denervation (whereby he diagnosed early ALS), followed by the specialist finding nothing of significance. We are settling into a mindset of BFS, when this was sent to me. This individual doesn't indicate any other symptoms except the fasciculation's which quickly progressed into full scale ALS. Your thoughts on this? Am I missing something?
Thank you for your support. We are hoping that the following months prove the BFS theory and a relatively healthy life, but we are in a state of limbo now and your help, insight is greatly appreciated.