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Quem

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Hi all, i am a 35 year old male.

January- Saw primary for back of neck pain. Prescribed muscle relaxers and suggested massage. Pain persisted, was also getting headaches so ordered a brain MRI.

February - Referred to neuro for non specific spots on brain MRI. Neuro was not too concerned but wants follow up MRI in 12 months. Neck/upper back pain continues.

March- Went back to neuro as my shoulders would now tire quickly doing simple tasks like brushing teeth. Neuro prescribes steroid and PT, MRI of back, and gobs of blood work. Steroid has no effect and other tests are clean.

May - No improvement, and leg fasiculations begin, heaviest in right leg but noticeable in both. True fasics and not random twitching, though i have some hot spots in several places. Right leg "feels" sore. Cramping in foot begins.

Go back to primary about fasics so that he can rule out ALS for me cuz Dr Google said so. He takes one look at my leg fasciculations and says "Thats weird", looks very concerned, tests reflexes, asks me if they are always this brisk (I dont know?) and immediately orders EMG.

June - Swallowing " feels" weird. Lots of phleghm in throat. Yawning causes throat discomfort.
Slurring some words, some hoarseness, and even holding my newborn is causing plenty of discomfort. Fasics continue.

The good - EMG of legs was clean. Why am i here then, i know. Docs concern really freaked me out. Neuro says he will do a spinal tap if i want?

I can still run and golf, albeit with discomfort. I know some of you cant and that is why i held off for a month before posting this. I hate to be "that guy" with a clean EMG and ask if the right areas were tested. I also know im presenting issues in my legs, shoulders, and now bulbar, which is not typical of an ALS presentation from what ive read here.

Every time i convince myself that im fine, i feel my legs and look at them fasiculating, feel my foot cramp, feel my throat "tighten", and strain to hold my newborn, think back to my primarys initial thoughts, and worry again.

Thank you for any thoughts you can share and for your time.
 
Primary care physicians might get a couple of hours on neurology in med school. That covers all neurological conditions. So most pcps have slightly better than no experience with ALS. Fasciculations are common in healthy people. Without clinical weakness and a clean EMG it sounds like you are in the clear. Enjoy the summer with the new baby.
Vincent
 
Thank you for your reply.

My EMG of legs was done June 2. Bulbar issues started a couple of weeks before that, tongue fasiculations began a few days ago. With that being said, would you believe an EMG of the bulbar area would be prudent, or is this a waste of time since i recently had a clean one of my lower extremeties?
 
While i thought the emg was normal, today a copy came in the mail.

"Increased insertional activity, fibrillation, or positive sharp wave potentials suggestive of active denervation were noted in the bilateral FDI foot muscles in isolation"

Does this count as abnormal? Anything to worry about in combination with my original post, or let this go and move on?
 
In your original post you wrote, "The good - EMG of legs was clean." Apparently your Neuro gave this to you verbally during an EMG follow up or consultation.
My opinion, your question is really one for your Neurologist. Can you call or Email him/her? Maybe one of the members who may be more familiar with this summary/impression will chime in.
 
He said something right after the exam along the lines of "a few things going on in your feet, but thats basically everyone since we use them so much".

So, i took that as normal, and was surprised to see those " scary " words on my EMG. I have a follow up July 24 and will inquire, but wanted to lean on this forums expertise in the interim and see if anyone had thoughts.
 
Al is correct that the doctor's assessment is most important and it sounds as if you have already received his opinion.

I can tell you there have been people who have passed through this subforum with similar reports often the changes resolved spontaneously and none have so far returned to report ALS. EMGs can show abnormalities for many reasons and the vast majority have nothing to do with ALS

Extremely isolated findings are not what PALS report. Rather the EMG often shows major issues in places the PALS thinks are fine
 
Al is correct that the doctor's assessment is most important and it sounds as if you have already received his opinion.

I can tell you there have been people who have passed through this subforum with similar reports often the changes resolved spontaneously and none have so far returned to report ALS. EMGs can show abnormalities for many reasons and the vast majority have nothing to do with ALS

Extremely isolated findings are not what PALS report. Rather the EMG often shows major issues in places the PALS thinks are fine

Would you say that statement holds true even in the early portion of onset? If i didnt have the fasiculations i never would have dreamed ALS based on my symptoms, so i feel like its early. And since you cant get the EMG "too early" i was happy with his diagnosis, but now after reading it im wondering if i had it done earlier than most and the likelihood that this is what an "early" dirty EMG looks like.
 
I had my first abnormal EMG 7 weeks after first miniscule symptom. It was previously scheduled for another reason I would not have thought to see a doctor. It showed abnormalities in other muscles as well as the area that was slightly symptomatic. I don't think it gets earlier than that.
 
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Thanks nikki. I tried to send you a private message of thanks for sharing that personal story but cant figure out how.

This forum actually helped me by NOT replying much to my original post as i figured everyone agreed with vincent, and now i have a not perfect EMG so i guess let the waiting game begin again...as i keep twitching and cramping!
 
Quem, Look... Either you or your insurance paid that Neurologist and for all the testing you've had. You don't have to play the wait game. Call the office and express you have a concern (question) on the EMG report you got. Or, usually most Neuro offices/centers have a web site. Check it out for a contact link.

You or your insurance have a few bucks invested in this Neuro.... I doubt him/her replying to a question would be an imposing inconvenience. Try it. :)
 
Took your suggestion Al, and neuro wrote back tosay that the study was near normal and these nonspecific issues in isolation could be from things as simple as walking.

I will follow up with the "active" part of this at my appointment but i am going to (attempt to) close the ALS fear chapter of my life for now. Thank you all very much for your time and if there is anything i can ever do to reciprocate, around Chicago or otherwise, please let me know.

Thanks again.
 
No need for the "Thanks"... Thanks for the thanks. Glad you communicated with your Neuro and you got a reassuring reply.

I'd say you can close the fear chapter, you got a reply from an extremely helpful and very knowledgeable member... Nikki.

Hope you're on the path to a cure of the issues you are dealing with.

35 is so early in life. When I was 35... pay phones were a dime. Chance are... you've never used or seen one! :) Take care.
 
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