Ongoing symptoms - thoughts?

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Jan 10, 2024
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First off, I tried to update my prior post but it was locked, so I apologize for a second post.

Background; I am 37/M and was Military vet from 06-14. Burn pits and such were banned by the time I was in so sonr recall being exposed to anything.

Twitching started first in Oct of 22. It never really stopped, just some days better than others. It is body wide. Started in calves for first few weeks and then began body wide. Although body wide, I'd say 70% stay in that leg and glute

I began having a sensation in my calf and I honestly don't know if it's weakness I am feeling. Basically it fatigue rather quickly with just walking/stairs or working out. It feels as if I did 1000 calf raises. That started shortly after twitching maybe Nov of 22.
I did my best to just forget it and love my life. I'm not sure if it let us slightly or I was able to ignore it, but Summer of 23 seemed okay. Shortly after(maybe Sep 23) it became prominent again. The calf seems to get hypertrophy the more I use it, yet also physically feels like less muscle and softer.

As I started investigating more, I've noticed the whole leg is smaller. My foot gets sore every day as if it's supporting a lot of weight with each step. The foot seems very stiff lately which is new. My big toe is slowly moving underneath the toe next to it. My hamstrings feel diff than the left, and are very tight. I've been going to PT for months with no improvement. My glutes are MUCH smaller. My massage therapist said there is def something going on which has my glutes MUCH smaller/weaker. I feel like when I press on my butt cheek, I'm pushing right to bone nearly. Hurts to sit on that side for more than 15 min or so.

Dec of 23 I had an EMG on the leg. They did about 8 muscles between the calf and thigh. Everything was normal except mild increased amplitude in just the calf. Recruitment, duration was normal. No SA or IA.

Mri of lumbar and Thoracic, and calf were negative for any findings that can relate to it, although I do have a lot of lower back pain, but was there for 5 years before this started.

Can als effect an entire leg evenly rather than attacking just a part of it? Nothing has failed, but I can't help to feel it's slowly heading there.

I am scheduled for another emg April 22nd and if it's negative this time, I feel I can move on, but I'm such a wreck. I'm suppose to close on a new home in a week and I have no excitement about it. All I do is question is if it's a bad idea incase this turns sinister.

Can I please have your thoughts? I've read many posts and your expertise seems sensitive yet thorough. Thank so. God bless.
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Your EMG cleared you of ALS. Sometimes things go undiagnosed and we never really know the answer.

That's not the case with ALS. Your leg, after this amount of time, would be weak and your EMG would show active and chronic changes if it were ALS. EMGs can check for and rule out many things so maybe when you get your second one you can ask what they are looking for.

I know waiting causes a lot of anxiety and anxiety will make twitches worse. Let us know what they say after April 22 and try to keep busy and off forums until then. It will serve you better.

Thank you for your service.
Thank you for the words. I'm one of the "can the emg be too early?" People at the moment as I feel this is are progressing super slowly.
Hi again. I just wanted to touch base and get thoughts again.

In 2019 I had a lumbar mri that showed severe atrophy of my paraspinal muscles. There was no explanation and didn't seem there was concern. A new MRI in 2024 showed no change and similar appearance to 2019. I was fine other than lower back pain up until 17 months ago when widespread twitching started. It was few months after that when everything mentioned above began.

I know it would be a very unusual presentation but if that atrophy was due to als, would the emg of my leg and arm pick up it? The emg was rather clean.

As of 6 days ago, my back began hurting much more and now I have a nasty Hot spot in my back. Strong twitches. Twitching there doesn't let up for more than 30 min typically. I do have a neuro appointment on 22nd but given that new Information.. any other thoughts?
Yes, it would pick it up. It sounds like you've got something going on, but it's not ALS. Just a reminder that this forum answers some basic info about the diagnostic process for ALS, but is not a general health forum. Your doctor really would be the best person to discuss your particular situation with. Hard to wait for sure, but the info you get here is ALS specific and anything else would be speculation only, which isn't terribly helpful for you.

Please let us know after your appointment on the 22nd how things go. Take care.
I understand. Thanks for taking the time. I guess thinking about the paraspinal atrophy got my brain running 100mph again.
Hello. I had my appointment today. I was hoping for emg but they only did clinical. All reflexes were 100% normal. Strength was 5/5 on all areas. He said he could not see my worry spots of atrophy but I'm 100% sure irs there. I can physically feel the muscle being much smaller and always tighter.

It did make me feel better but without the emg, it left me worried still.

Is the clinical more telling than an emg?
Both are important. But if you have a normal exam you don’t have ALS because ALS requires abnormalities found only on exam as well as an emg consistent with ALS AND ruling out mimics. Anyway you already had an emg
I received the actual report today. It reports 3+ reflexes bilaterally everywhere. Last time it was 2+ everywhere. This is a diff doctor. Could 3+ be what he deems normal? Of course Mr Google says 3+ is borderline abnormal. It also reports 2 beats clones bilaterally which wasn't reported last time. Doesn't specify where though. Additional my CPK came back at 109. I know it's a non specific test but should that give me any peace of mind as well?
Both those things are normal variants. Especially that your reflexes were the same everywhere. Could be examiner grading they are subjective or may be you were a little anxious or caffeinated or something. 2 beats of clonus is not considered pathological and again it was bilateral. You still have a normal exam.

You can’t tell anything about ALS from the CPK. It would be high is you had a myopathy though
Hi all. Recently I've noticed my shoulder feeling weird with movement. Rolling my shoulders creates loads of cracking in my L scapula which I understand happens with weak or atrophied muscles under and around it. Also; my doctor acknowledged slight scapula winging there. This is a new symptom. He refuses ro do an emg, even for my peace of mind as the clinical was normal. My emg in December was on my left arm and right leg, nothing In back. Even that showed few high amplitude muap's in my calf. The feeling of a slow progressing als embedded in me and I don't know what to do.
We can’t make your doctor do anything. You can either accept their opinion that there is nothing to be done at this point and go live your life or you can seek another opinion.

If you do have some progressive disease ( for which it seems there is no real evidence) you won’t have to chase it. It will declare itself soon enough

If you can’t live your life because this is consuming you, whatever it is, ask for counseling. There is no shame in getting help when you are stressed
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