Not convinced about my EMG results

[ryli]

"At issue," as in "called into question."

In other words, it's not whether you have BFS vs. whether you have risk for ALS or something else serious. There's thousands of conditions in between, that cause EMG blips, that should not really affect your life.

Night shifts are not the best for sleep, stress, anxiety, etc., either. Not clear if you are still working nights but a good counselor can help you get off the sleep aids by substituting different methods for falling asleep, if you want to.

The concern for the abnormal emg is that when it was tested previously it was normal and my symptoms were much less worrisome. Now that they symptoms have increased, there is an abnormality that he said he was concerned about. Thank you for trying to re assure me. It does feel like I have a hope. I really should just be worrying about what I have right now because it is quite debilitating and lowers quality of life.

I don't know if you have had fasciculations that are non stop, even when you try to sleep. they are literally 24/7 and drive you insane. It's worse when you are not moving. I would never be able to get away from the sleep meds at the point I am at sadly. I still feel them all night long and also jump out of bed at times from the cramps, even with the sleeping pill because it only helps you fall asleep. It doesn't keep me asleep.

 

[ryli]

The concern for the abnormal emg is that when it was tested previously it was normal and my symptoms were much less worrisome. Now that they symptoms have increased, there is an abnormality that he said he was concerned about. Thank you for trying to re assure me. It does feel like I have a hope. I really should just be worrying about what I have right now because it is quite debilitating and lowers quality of life.

I don't know if you have had fasciculations that are non stop, even when you try to sleep. they are literally 24/7 and drive you insane. It's worse when you are not moving. I would never be able to get away from the sleep meds at the point I am at sadly. I still feel them all night long and also jump out of bed at times from the cramps, even with the sleeping pill because it only helps you fall asleep. It doesn't keep me asleep.

I also meant to tell you that when the specialist sent his report to my family Dr. and recommended Mexiletine for my cramps, my PCP said he knew nothing about that drug. When I got home and researched it, a recent study said that it was the best med for cramps in ALS. Pretty much all of the info. about it says it's for ALS. That terrified me. I started putting things together in my mind, that he didn't include the weakness he said he found in my right leg, that he only mentions one high CK, that I was previously checked for ALS and it was negative, he did not say that he checked me for ALS just that it was previously checked...... that my EMG was "essentially normal", he also didn't check my gait, or balance yet in the report he says gait was normal. Basically what made me start researching everything was after I gave my chiropractor who I see weekly, his report, she said it doesn't read well with all the discrepancies and she said a provisional diagnosis is basically him saying that he really doesn't know what it is. I felt that maybe he might suspect it but that it is too early for him to say so. That led me to really examine symptoms i am having which led me here. Thank you for your input and time, I do appreciate it.

 

[KarenNWendyn]

Please do NOT take a slightly elevated CK as a sign you have ALS. As I said, there are many, many reasons for an elevated CK with normal variant being up at the top of the list, and ALS at the very bottom. I was a rheumatologist for over 25 years and did plenty of consultations on people for elevated CK, and not once did I find it in someone due to ALS. That’s because ALS is so much rarer than just about anything else associated with an elevated CK. That said, CK can be elevated in 40-50% of people with ALS. Mine was normal.

“Weak feeling and sensations” points away from ALS.

But I shouldn’t have to be countering you point for point. You’ve seen a neuromuscular specialist who doesn’t feel you have ALS. And your EMG is more suggestive of a peripheral process.

Rather than trying to convince people on this forum that you have ALS, I would suggest you relay your concerns to your neuromuscular specialist. If you don’t believe him, then get another opinion from another neuromuscular specialist.

 

[ryli]

Please do NOT take a slightly elevated CK as a sign you have ALS. As I said, there are many, many reasons for an elevated CK with normal variant being up at the top of the list, and ALS at the very bottom. I was a rheumatologist for over 25 years and did plenty of consultations on people for elevated CK, and not once did I find it in someone due to ALS. That’s because ALS is so much rarer than just about anything else associated with an elevated CK. That said, CK can be elevated in 40-50% of people with ALS. Mine was normal.

“Weak feeling and sensations” points away from ALS.

But I shouldn’t have to be countering you point for point. You’ve seen a neuromuscular specialist who doesn’t feel you have ALS. And your EMG is more suggestive of a peripheral process.

Rather than trying to convince people on this forum that you have ALS, I would suggest you relay your concerns to your neuromuscular specialist. If you don’t believe him, then get another opinion from another neuromuscular specialist.

Ok thank you

 

[ryli]

Ok thank you

Ok thank you
I am not trying to convince anyone. I came here thinking someone else might have the same symptoms but I didn’t realize that its not that type of a forum. I didn’t understand the forum title “is this ALS” I thought it was ok to talk about my symptoms. If I’m not diagnosed with als then I shouldn’t be here I guess.
Just to let you know, my neuro said it’s a neurogenic process.

 

[ryli]

For a former Dr, your bedside manner isn’t very kind. I feel belittled when I’m coming from a place of concern.

You must be tired of the ppl using this particular thread. Maybe you need to take it down to get a break from people trying to convince others they’re
Your initial patience was appreciated but you seem to lose your patience too quickly for someone that should understand what ppl are going through. I am a police officer of 18 years so maybe it’s my style of writing but you took it wrong..It’s unfortunate.
Lisa

 

[Clearwater AL]

Lisa, you wrote... "I am a police officer of 18 years ...."

You know better than others.... you collect the evidence and follow the facts.

The Neurologist/Specialist has collected all the available evidence and they
have determined the fact you do not have ALS.

Something else is going on but it is not ALS.

I'm sure your bedside manner got stern when a suspect refused to listen.

As you have presented and persisted yourself here... put the same on your
Neuromuscular Specialist His/her bedside manner may be more unkind than
what you have accused Karen of.

 

[ryli]

Lisa, you wrote... "I am a police officer of 18 years ...."

You know better than others.... you collect the evidence and follow the facts.

The Neurologist/Specialist has collected all the available evidence and they
have determined the fact you do not have ALS.

Something else is going on but it is not ALS.

I'm sure your bedside manner got stern when a suspect refused to listen.

As you have presented and persisted yourself here... put the same on your
Neuro. His/her bedside manner may be more stern than what you accused
Karen of.

There’s not much of a chance for ppl to state their experience and symptoms as they know them before someone is directly and harshly opposing them.
Yes, I had to take control of suspects, bad guys, people that have done illegal and wrong things... this forum is taking a very stern approach to some people that are hurting and looking for answers. I assumed it was a back and forth place to talk things out but if anyone steps off the strict guidelines here then they’re here to just convince people that they have als.. that’s rude and uncalled for. I’m being serious when I ask, why do you want this thread then? It’s natural people will give some push back because they’re trying to get more information. Anyways. You could give a little more understanding to some that are truly trying to help themselves, in my opinion.

Best regards

 

[Clearwater AL]

Lisa, this Thread, your Thread, is about to ramble on to a third page.

You've heard from extremely knowledgeable ALS members. Yes, one is a doctor.

You wrote....

"This forum is taking a very stern approach to some people that are hurting and looking for answers. I assumed it was a back and forth place to talk things out but if anyone steps off the strict guidelines here then they’re here to just convince people that they have als"

This Forum has been here for over ten years. Thousands of DIHALS (Do I Have ALS) threads and questions
have answered by members who know ALS... far better than you.

It's called experience.

Finally, you also wrote...

"I’m being serious when I ask, why do you want this thread then?"

It's up to you...

 

[KarenNWendyn]

Lisa, this thread has run its course. You’re dealing with people here who either have ALS (myself including), or are caregivers for people with ALS, or have lost loved ones to this disease. You have our opinions and can read through the thread. I will be closing this thread.