EMG Interpretation

[Bestfriends14]

Your symptoms are all over the place, not one area at a time as seen in ALS. If you go to the ER (I'm not sure for what), will they put a peg tube in? I highly doubt it because you don't have a diagnosis of anything. That's a very extreme measure to take without a diagnosis and without any specific disease presentation.

My advice is to continue working with your docs. You've been posting for going on three years and yet, in all this time, and your many, many doc visits, you've not once had any clinical function failure. I'm not sure why you cannot let this very important fact guide you to move on from thinking you have ALS. I'm sorry that you choose to overlook this fact, but I honestly cannot hazard a guess as to what is happening with you. Because your symptoms seem transient, it's even more difficult for folks here to guess what's going on. It's not this forums place to do so, anyway.

I sincerely wish you the best in getting answers.

Take good care.

 

[lgelb]

I don't know why you wouldn't go ahead with the barium swallow. It's information, and you say you have a severe problem. And the EGD is looking at different anatomy.

If you went to the hospital and were malnourished, they would probably start with IV nutrition to get you stable, then continue the diagnostic process before considering something as drastic as a feeding tube.

 

[Clearwater AL]

Michael, you have posted 24 messages starting with your foot/leg
weakness 2+ years ago now up to swallowing issues. In a previous
reply… “your symptoms are all over the place.” One could
get the impression you are ALS shopping. After reading all of your
messages, my opinion… you have OCD for an ALS diagnosis.

You have been on this site for 2+ years and scoured and read countless
threads and replies to know our position on posting pictures but you
did anyway.

Only the Neurologist told you… you do not have Split Hand.
You can now move on from that one.

There’s hardly anything more anyone here can add to your latest
thread (this one).

Maybe wait to post message 25 with the results of another (next)
EMG and post the Interpretation/Summary/Conclusion.

I hope you find the path/cure/treatment/believe that will take you out
of your current burden of Health Anxiety and on to living life. Something
ALS takes away.

 

[affected]

I'm sorry you are going through so much. You seem quite confused about what is what, so I suggest you make an appointment with the diagnosing doctor, take a list of questions, go through everything so you are really clear on what is going on, why each test is being ordered and what your main issues are in the eyes of your doctor.

Your swallowing issues can't be too bad if you want to put the testing off, and an ER is not really the place to go unless you develop an aspiration pneumonia.

Please, get things straight with your doctor as I'm really concerned about your confusion.

 

[Michael949]

Wow. I really didn't expect these responses.

bestfriends14 - My symptoms are not all over the place and "transient." At no point do my symptoms come and go. I have been consistent since I started posting on the site in Oct 2019. I have weakness in both arms, left leg/foot, and now something is going on with my swallowing. Things have gotten worse, not better. I do not have full blown muscle failure but muscle weakness in my arms, hyperreflexia, and atrophy in my right hand was detected on my last clinical exam.

Laurie - The barium swallow is not different anatomy. It's the esophagus, just like an EGD. Only difference is that they are testing the swallowing mechanism as opposed to looking for physical changes during an EGD. However, my trouble swallowing is coming from my throat, not my esophagus. That is why I suggested I may wait until I get my EMG.

Clearwater and affected - all I can say is that this is not OCD and I'm not confused.

 

[rmt]

Michael949, what is your goal here?

When I first came to this site, I desperately wanted the experts here to tell me that they didn't think my husband had ALS, even though his doctors thought he did. And even now, years later with his ALS diagnosis from several ALS specialists, I recently privately messaged one of the experts here with his latest exam and test results, trying to convince her to tell me it could be something else. Anything else. Anything treatable. Slightly pathetic, yes. But if I could just find one person to say it is something different, maybe it would be true.

So I ask you, what are you hoping the people here will tell you? Are you hoping they will tell you they think you have ALS?

 

[lgelb]

Actually, Michael, a barium swallow, utilizing contrast, reveals different aspects of the anatomy, the pharynx (commonly, "the throat"), for example, to study the swallowing action, than the upper endo, which is a camera-aided inspection, sometimes incorporating ultrasound. So a barium swallow to look at the mechanics of swallowing is very on point for what you describe and an upper endo is no substitute.

Sounds like you want to direct your own diagnostic process, which fortunately has not revealed anything definitive or serious in the nearly three [corrected] years you have posted here. So you will appreciate that P/CALS dealing with a very real, disabling and fatal disease look at those years and say, "Why?"

I don't dispute that things may be getting worse from your perspective. However, if you have a gradually progressing muscular disorder, GERD, stricture, tumor, allergies, whatever you may have, it sounds like you are in a process to find that out. It is fair to say that no one here is going to see ALS as that progressive explanation at this point.

Feel free to stop back by with the EMG table and report, and barium swallow results.

 

[affected]

Definitely feel free to post the results here, but until you have the EMG and if you go ahead with MBS post that too.
My husband died of bulbar onset ALS, I have supported people with this disease since 2013, I have a fair idea of the tests done and the difference with them.

We truly hope you find answers, but are confident that ALS has been ruled out. That's the end of the kind of assistance we can give. Posting your results will help others coming after understand why we have responded the way we have.

I truly hope that you can sit down and sort through this with your doctor. Only a doctor examining you can give any further input.

 

[Clearwater AL]

Michael, I've been following you and the ALS threads you have been researching.
One was going back to November 2014.... this is not helping you.
Reading old threads would cause confusion searching for one that just might
relate to your circumstance.

Honestly, I looked at the pictures of your hands. I'd have to say... PALS here
could show you pictures of real ALS hand atrophy.

Again, post again after you have the EMG with the interpretation/summary
at the bottom of the report. Maybe, just maybe you will be able to put the
fear of ALS behind you. If you finally come to believe the results.

 

[Michael949]

I will post the results of the barium swallow and EMG.

Just want to correct Laurie - Oct 2019 to present would be just over 2.5 years. I don't why you are saying I've been on the site for 4 years.

rmt - I don't think anyone claims to be an "expert" on the site.

Clearwater, it is true, I have been looking at some old threads to see if others have experienced the same symptoms as me. This does not replace the care I get from my doctors. I know that.

 

[rmt]

Michael, what are you hoping the people here (who are not experts) will tell you? Are you hoping they will tell you they think you have ALS?

 

[Clearwater AL]

rmt, I agree with you but I would like to point out we may not be experts
(neurologists) but we have members, Mods, who are extremely ALS knowledgeable
with years of first hand experience, CALS, PALS and those Who Lost Loved Ones
have dedicated themselves to this forum.

One or more (Nikki) have participated in testing, EMGs for study beyond
their (her) initial diagnosis. Igelb (Laurie) has given 10 years of research
and study after losing her husband. Affected (Tillie), Shiftkicker (Fiona)
and few others… again, first hand experience. Where better to get
factual information for EMGs, BiPAPS, equipment, in home care,
disability compensation, VA benefits short of… a face to face with an
neurologist/ALS specialists.

Ok, I just went off about any “Could This Be ALS’er” who wishes to
doubt the facts they have been given, (they do not have ALS), solid
advice of who to see for their non ALS symptoms, try to address their
Health Anxiety ( in denial) but reply again and again regardless.

Maybe my post is inappropriate here… Mods, move it to another
sub-forum if so. Just had to get this off my chest.

 

[rmt]

Oh, I consider them experts! Because they are! I think they have more useful and practical information than any doctor we've seen. Michael is the one who said they don't consider themselves experts, so I will humor him in hopes that he will answer my question this time.

 

[Michael949]

rmt, to answer your question - no. I just ask about specific issues like what happens if you need to be put on a PEG in an acute scenario. Or my previous question, how do neurologists look at so much information when performing an EMG and try to interpret in real time. I'm asking and expecting an answer solely based on members' experience as CALS and PALS, not as a doctor.

It actually says in the stickies, "Remember we are not doctors or diagnosticians, so we will not diagnose you, but can only tell you if your situation sounds like our experience."

I stay away from asking directly if my case looks like ALS anymore because I've seen members being told that "this doesn't sound like ALS at all" or "ALS would be at the bottom of the list" and then they return a month later to post they were indeed diagnosed. I don't want to get my hopes up.

 

[Clearwater AL]

Michael... last paragraph...

"because I've seen members being told that "this doesn't sound like ALS at all"
or "ALS would be at the bottom of the list" and then they return a month later
to post they were indeed diagnosed.

"They" (are you referring to many?) Maybe one or two+ of hundreds... and we have
no way to prove they were really diagnosed.

Again, maybe save message 28 until after you have had your coming EMG.
Really nothing more anyone here can add to your situation.