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hunterross258

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Dec 17, 2014
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Learn about ALS
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FL
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North Port
Hello all. Hope to not waste your time here. I am Hunter - a 27 yo male. I first want to say that I read the stickies and have seen doctors, but find myself here because I just can't seem to find some answers.

Here's a brief..okay maybe not brief, timeline of my symptoms and such...i apologize for length. Figure it be better to detail everything. If you can post any thoughts, great...if not, i understand yall deal with crazies like me regularly so i wont take any offense to no respons.

September - went to neuro for left arm weakness and twitching. he diagnosed with carpal tunnel first and said second guess was slip disk in neck. he noted some thumb wasting in his exam but no weakness. i requested EMG but he gave me a splint and said to come back in 2-3 months

Unfortunately, I couldn't wait and got anxious regarding the situation after, of course, mister google (he isnt a doctor sine i see no PHd). I ended up in the ER twice with left arm issues...blood tests came back normal - they didnt test for vitamin deficiency or anything though. i have been taking b12 & magnesium though as i know these can sometime help the twitching.

Went to my GP to see what he thought and he noted a 1cm difference between left & right calf, said not to worry and perscribed me with anxiety meds.

October - after being unable to wait the 2-3 months from first neuro, i went to another one who did all of the regular clinical exams and such and noted no symptoms to be concerned about. he said he'd be happy to do an EMG and he did so the next week. He said that he noticed fasics (dont no correct spelling) in my left arm, but that was it. i asked about my thumb wasting and he said that there wasnt weakness, so not to worry. 2nd neuro along with my GP said no carpal tunnel. I had also been concerned about an odd feeling in my leg...felt kinda heavy and also had twitching but nothing on the EMG/NCV.

something was still going on though, so i continued to investigate seeking out answers through an orthopedic with Emory. an mri with them showed some cervical spine issues in my c4-c5 area and some joint arthritis. it explained upper arm weakness, but didnt explain my hand issues, which were getting worse. i went to PT for 6 weeks and it didnt do much so i was referred to a specialized orthopedic doc who does the epidural shots. he did a lot of the strength tests as well and noticed weakness in my pinky (first time clinical weakness was recognized). It seems to shake when pressure is applied to it. This concerned me. The doctor said he was "very surprised" that nothing showed up on the EMG with the amount of thumb wasting I am showing, but said another one wasn't necessary. He tested reflexes which were all in normal range.

He ordered a brain MRI...which is pending approval from my insurance. I assume to rule out something like MS.

Current symptoms:
-Left arm weakness (perceived for the most part by arm shook during yesterday's clinical exam). I'd say i begun to notice my left arm issues in late august/early sept. It is mostly my upper arm.
-Twitching (most of it occurs in my left arm by my elbow area..inner elbow and also at the top of the elbow. I also get some jumps in my right leg.
-Clinical weakness in the pinky finger.
-Full/heavy feeling in right leg.
-Dry mouth/hoarse voice - some days i feel like my voice doesnt project. No slurring, but the occasional stumbling over words.
-Thumb atrophy, which yesterday's doc said was "classic" for carpal tunnel, but that was ruled out in my October EMG.

Questions:
1. if the EMG was done right, it would show something, I am aware. He spent a good hour or so with me and poked needles in my left arm and leg and my right leg. i got the results back and everything just listed as normal. There weren't really details, just said normal. Nerve conduction had lots of details. Is normal different than clean? Just not really understanding weakness if my nerves came back fine...

2. Is the pinky/hand weakness something to be concerned about at this stage or do you think it has all manifested too quickly to be worried about ALS? Thumb atrophy - if there's no weakness and doctor note atrophy, it isn't ALS atrophy, correct?

3. Does leg weakness/foot drop present with a progressing inability to raise your toes? In my right leg, i definitely feel more strained/burn when i lift my toes, that radiates up the side of my leg.

4. Twitching. The original bout of twitching was in my inner elbow. It was ever so gentle, I could barely feel it. Now, it does that but also has some big jumps that cause part of my forearm to twitch as well. Twitching, yet no clinical weakness noted...not from ALS right?

Apologies for the novel, but I figured again with all the crazies yall deal with, if i could just get questions answered without posting multiple times, it would be a better idea. Thanks in advance.

-Hunter
 
Forgot to mention with the pinkie weakness that i seem to be missing some keys while typing. Hand clumsiness i guess i'd describe it as.
 
Have you point blank asked the doctor's that you see what they are actually trying to look for in the tests? You didn't mention once that they suspected ALS. I'm sure from your symptoms that something is going on medically but I don't know why you'd suspect ALS as the culprit. Too many other things to rule out first. If the doctor's aren't concerned about it you shouldn't be either. We aren't doctors so we can't even begin to try and give you a diagnosis. Please trust your doctors and ask them more questions directly to them. That is what they are paid for. They should give you a explanation as to why they are doing stuff.
 
I asked why he ordered a brain MRI and he said before he makes a diagnosis, he wants to have a look at the bigger picture. Unsure if I should pursue a second EMG or not as things have seemed to have gotten worse. After the EMG came back normal, I was really in a good place until things have progressed in the recent weeks. Just not sure how to address the new weakness and the worsening of the twitches in my arm.

Thank you for your reply skipper. It is greatly appreciated.
 
All is saw on the EMG report was the nerve conduction study and then the EMG part was as the bottom of page two and just listed Normal for all nine areas he did. Wonder why there were no values or anything...
 
Hunter... you've been to a GP, two Neuros, two Orthos (even though I am a detail reader I may have missed one) and including 6 weeks of PT. Nowhere along this journey of medical professionals... none of them mentioned ALS/MND. Think that might be a clue?
 
I guess it should be, huh Clearwater? Haha. I appreciate you taking the time to respond to my post. I will refrain from further questions as I know that I have asked enough already.

Thank you again.
 
My last question I promise. Is it odd for the EMG results they gave me to not have values for anything? I'm gonna call and ask but just wondering if this was in any way peculiar?
 
Hunter... really, what difference does it make if the summary says, "Normal" ? If you are pursuing a diagnosis of ALS/MND make the call tomorrow and ask for your medical records. There is a web site that explains EMGs... full of numbers, pluses, minuses and parameters.
There isn't too much peculiar about "normal." But... do what you gotta do.
 
I have the emg in my hand. What I meant was there are no values or numbers. Wasn't sure if that was unusual. Thanks again AL. I'll seek further answers through the pros.
 
Hunter... once again, you've been to a GP, two Neuros and two Orthos. How are the "values or numbers" as you say going to help you? If you doubt two Neuros... you'll doubt the "values and numbers" too when you find them "Normal." Which "Pros" will you turn to then? But... do what you gotta do. Done. Good luck.
 
Thanks. Seems a reality check is long overdue. All the best to you in your journey AL
 
I should probably just let this thread die, but no it is not unusual for the EMG report to just say normal (or NL) on the line for a muscle. First understand that there is no single standard format for an EMG report, but typically the muscle tested is listed on the left, then columns for Fibrillation, Spontaneous Activity, Fasciculations--which show acute degeneration. If these are blank, normal, N or NL, it typically means that muscle has no acute denervation.

The next columns show different aspects of the MUPS (Motor Unit Potentials) and tells whether your muscles show chronic denervation--that is the muscle has denervated and then another axon has found that muscle and reenervated it. Once again, if these columns are blank for a muscle, or show normal, N or NL, it typically means that muscle has no chronic denervation.

If the EMG shows other values like +1, +2, etc., Then the EMG has found denervation and your neuro should explain his findings. But, yes, you want the EMG part to be as empty as possible... just lots of Ns or NLs
 
Thanks for your reply Dusty. Called the neurologist today and they said it is completely normal for the report to look like that. I just wasn't sure if there was a difference between normal and clean. Anyways, I am less concerned.

As I said in original post, I had a brain MRI today and the technician, after I was finished, said "I think I may have seen what is wrong with you". I am very displeased, because as a tech, you shouldn't say anything other than how long until the results are in. Ugh.

Again, thanks for your reply Dusty and feel free to close this thread if you'd like. I don't believe I will have any further questions.

All the best.

-Hunter
 
Just to clarify, there were "NO" values. Just the word normal listed to the right of each tested muscle. The columns for Fibrillation, Spontaneous Activity, Fasciculations you mentioned were completely blank along with MUPS
 
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