Not so clean EMG

[Bestfriends14]

I'm sorry you feel you feel fobbed off. As you have mentioned it over and over, you must be very hurt by what was posted in response to your questions. For that I apologise.

Numbness is not an ALS sign. Full stop. This is because ALS affects the motor nerves, not the sensory nerves. While it may have been coincidental, it's not part of the onset of ALS, unless someone was using it synonymously with loss of function.

What can you no longer do that you could before? You may have been fobbed off because you have not lost function of how to do something. Not that something is difficult to do, but things are where you can no longer do them. For example, zippers, buttons, going up on your toes or back on your heels. In terms of bulbar onset, do you aspirate on water or do you present with slurred speech? For respiratory, do you have a build up of CO2, have loss of appetite, trouble walking in the morning, or unusual sleepiness?

If you have none of these issues, it may confuse folks as to why you're worrying about ALS. Only time will tell with your symptoms. Whatever it may be, I hope you get to the bottom of what is going on, because it really, really does not sound like ALS.

Good luck with the next steps and please keep us posted when you have a confirmed diagnosis of what you have.

Take good care

 

[Becca15]

I’ve struggled with my breathing when supine for a few months now. My voice is different and I find it hard to swallow at times.
I’ve had several face twitching and neck spasms to the degree it’s caused neuralgia as the muscle at the base of my skull it spastic hence the reason why I’m on baclofen and carbamazepine. MRI head, full spine and bloods for autoimmune etc all normal apart from slightly raised CK levels. I cannot carry shopping or do what I used to do before.

 

[lgelb]

Here's an example of why it's hard to worry about ALS. You report that you can no longer carry shopping. But neither your NCS nor EMG showed nerve damage in your limbs, as we would expect to see not only in ALS but in any other condition where motor nerves are damaged or not working well.

So that is why I mentioned the possibility of something systemic (which, quite honestly, can include conditions that anxiety exacerbates, such as hyperventilation, of which there are hints on your latest attachment). Of course, hyperventilation can also relate to chronic pain as you report. So there is lots to dig into. I just don't see ALS in this, nor do your tests at this point. Being unable to push out stool or urine (esp. to the point of needing a catheter!) at outset doesn't fit, either, at all.

 

[Becca15]

He didn’t test my arms on EMG. However he did NCS on them.

 

[affected]

I'm so sorry Becca you are obviously going through a lot, and I can't imagine how frustrating it is to still have no clear answer.
All we can say is that what is happening just does not fit what we know of ALS.
Please do let us know when you have a definitive diagnosis. We don't mean to offend, we just can't do anything by text when doctors examining you are still working it out.
I hope they find exactly what is going on soon.

 

[Lkaibel]

Becca, I feel for your situation. My Brian had at least quick, decisive answers from a single EMG as did My D. In better news, it’s been stated that the nuero is not seeing ALS now. As Lauri has said, there are numerous nerve conditions.
Best to you in your journey.

 

[Becca15]

Update: saw neurologist who has seen less than a handful of patients with ALS. Admitted my private EMG was abnormal, I asked for a repeat in a few months and was refused another EMG. He says he doesn’t know what it is. 🤦‍♀️🤦‍♀️🤦‍♀️
I explained that I had polyphasic potentials, PSW, reduced recruitment pattern and Fasics and abnormal duration, he’s still clueless as to what this is.
Im deteriorating, back spasms and cramps too. Cannot turn around to pick anything up without cramps and spasms.
I struggle to keep mobile during the day, I feel so weak. No clear answers,

 

[affected]

Sorry Becca - doesn't fit ALS, so just like the doctor we can't give any clue as to what is going on.
You may need to return to your PCP and ask them for guidance on what to do next, eg looking for something systemic. Let your doctor guide you though, don't try to figure this out yourself as you are only making it all the more stressful.
PALS don't find they can't do things due to cramps and spasms, what is going on is something else entirely.
I hope you find answers.
Please understand that our resources here are limited to ALS, so it's now for you to work through with your doctor. All the best.

 

[Bestfriends14]

Becca, you don't have ALS. There are several reasons why, and they are lack of ALS symptoms, clean clinical exams, and clean EMGs. At this point, you're coming back to this site to mine for a diagnosis and that's beyond disrespectful and inconsiderate. Really and truly, there's nothing that can be done for you here. I wish you all the best and hope you find your answers with a trained medical staff, but you will not get your answers here.

Take good care.

 

[Becca15]

How is this a clean EMG?

 

[Clearwater AL]

Becca, there are 25 messages on your thread, it's gone on for two
pages now.

At the bottom of any EMG report is a Summary/Conclusion...
If you can... it would be very helpful if you could post that too.

 

[affected]

Becca, the EMG is a tool used to diagnose hundreds of conditions. So many people can have an abnormal EMG, but that does not mean they have ALS. The EMG is used in combination with clinical findings.
I truly hope you find some answers, I just don't see what good it will do for you to try and argue it out here. You've asked, we've answered. We are not doctors, but you are asking the terminally ill or their partners, to help you when they would love the to have such mild results.
Please, we aren't saying nothing is wrong, we are saying it doesn't appear to be ALS, please work with your doctors. I truly wish you the best but no amount of messages here will solve anything for you.

 

[Becca15]

When the doctors are clueless, I had no choice but to post on here

 

[Nikki J]

You are not compelled to post here So yes you have a choice We can’t diagnose you. Posting here does nothing constructive for you at this point. the reason for this subforum is to answer questions about the diagnostic process and to answer does this sound like our experience. Our attempts to help obviously haven’t succeeded. I wish you luck in finding an answer. I think there are undiagnosed groups on fb and reddit you might find people who can relate better

closing thread. Please only start another if you have a diagnosis of something to share