Back again, need some advice

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hezzera

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Hello everyone, I hate to have to post again after so long. Please please hear me out before quickly giving me the boot.
I posted back in 2015 with some concerning symptoms I had been having since 2012. Muscle twitching, dizziness, perceived weakness, dexterity issues...
There were times over the past 7 years where all these symptoms seemed to disappear (besides some easy fatigue in hands when let’s say, spraying a water bottle) and a twitch here or there. 2012 was when all of this first hit. It faded about a year later and then came back in 2015 (this is when I made my last post).
It lasted maybe a good 6 months before fading for quite some time. June of 2019 is when the twitching ramped up again, my usual perceived weakness spots felt way worse than before, and the dexterity issues came back worse than before. Some issues have faded some...but my hand issues persist.
Now before I proceed, I saw one neurologist back in 2012 when this all started. He performed a brain MRI and an emg/ncs and couldn’t find more than mild carpal tunnel.
I haven’t seen a neurologist since then because like I stated, these symptoms seem to subside for a good amount of time where I gladly tried to move on with life and forget about it completely.
I’m very aware that ALS does not “come and go” and always tried to tell myself I must be dealing with BFS and this is just how it is. I was always able to rationalize that I don’t have any functional failure so I need to stop assuming ALS.
What has me concerned is my hands. I’ve had on and off dexterity issues since this started back in 2012, but it only lasted a day to a couple months. This now has been an issue since June of 2019 and what I can’t get past is my thumbs. What I’ve noticed is causing my “clumsiness” the most is my thumbs joints caving in. On both hands. If you’re familiar with Froments sign or Jeannes sign, both of my thumbs do this now. This was never an issue before and it’s definitely not something I can pass off as perceived. It effects my pinch grip and feels awkward when let’s say, I go to grab a handful of popcorn.
I know the internet is a useless place to try and find a diagnosis, so I decided to head to my PCP to have all of this looked into. She sent me to a local neurologist to get tests done while performing her own set of blood tests.
The neurologist was very young, 8 yrs experience. Did a quick clinical exam and ordered bloodwork, ncs/emg, and brain/neck/spine mris.
Her bloodwork covered sjogrens, lupus, and ck levels. All negative. CK normal. Negative ANA as well.
I will be posting the results of the various mris and ncs/emg with this.
She said the only thing found was mild carpal tunnel in the right wrist she performed the test on. EMG supposedly normal- she wouldn’t give me a copy with the waves, only text.
My confusion is this..through some research on Froments sign, it appears to be an ulnar nerve issue. If no ulnar nerve issue was found on the ncs and I’m not having sensory disturbances with my thumbs- wouldn’t this point towards a motor neuron issue instead?
There is a definite change in my thumb joints and the “caving in” under pressure. This I cannot mark as perceived. I’ve been having a lot of localized twitching in my hands and thumbs lately as well.
Any insight would be appreciated. I understand that I’ve been dealing with this a fair amount of time, but I don’t feel like that excludes me from developing ALS just like any other person.
Once again, I appreciate your responses. Thank you for taking the time to read this.
 

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Your EMG is textbook normal. There is absolutely no evidence of ALS.
 
Thanks for your quick reply. Two questions lingering:

Do EMG results vary by operator? Meaning, do they leave a lot of room for error?
Also, I was hoping someone could give me some insight on the NCS. Is the ulnar nerve effected at all based on those results?
 
An emg is a learned technique. However, your emg was normal and it isn’t like she saw abnormalities at all. Believe me ( as someone who has had repeated emgs as a FALS person) both normal before symptoms and abnormal after) ALS does not look remotely normal on emg. I am not at all trained in emgs I could tell something wasn’t right.

yes they saw ulnar issues on the ncs. Read the summary. Abnormal ncs, normal emg, no als. Congratulations
 
Hello, back again. I’ll make this my last post until I have an official update from a doctor.
I’m still very concerned with the status of my hands/thumbs.
They seem to have gotten worse over the past week now. Both my thumbs are “caving” at the MCP joint under pressure and I’m unable to stop this from happening. I fumble everything because of it. It appears that the rest of my fingers are slightly “clumsy” as well.
Not only this, but I still have the hotspots near my shins that make walking awkward and also the clicking in my throat when swallowing which sometimes feels like I’m half choking as well.
Twitching occurs a LOT in all these spots and has me pretty concerned over the last week at how this has taken a turn over the past half a year.

I always assumed that time was on my side with the duration of symptoms and that having issues for over 7 yrs “put me in the clear”...but now I’m not so sure that’s the case.

I’m finding it hard to believe my hand issues stem from cts or an ulnar nerve issue when I have no sensory symptoms except both my hands falling asleep at night. Otherwise no pain or tingling.

And even if I could dismiss my hand issues w nerve findings- that still leaves the “perceived weakness” in my shins and my throat issues.

I’ve made an appointment with Dr Roos in Chicago but have to wait until next month to see him. I’m starting to wonder if my EMG was done too quickly by my last neuro. She literally stuck the needle in, told me to flex, pulled it out and onto the next spot. The EMG portion took literally a little over a minute or two.

With how my fingers have been feeling lately, I feel an opinion from a neuromuscular specialist is the next step....

I wish I could boil it down to anxiety. The bilateral thumb joint instability is not perceived or imagined. I don’t want to ruffle any feathers so I won’t try to go back and forth regarding this...just frustrated at these issues that seem to be getting worse. Maybe I shouldn’t have vented here but I can’t understand how so many muscles are affected and nothing shows up at all on an emg.
 
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You are showing CLASSIC signs of ANXIETY.
The EMG doesn't lie, it reports what is going on.
Your feelings however can be very unreliable and completely subjective.
Doctors finding nothing do not spend a long time checking and rechecking with the EMG. A fast EMG means you are clear.

Please, 7 years, we are over and out.
 
You're overthinking, and linking things that aren't necessarily linked. And people with anxiety are quick to assert that fumbling, perceived clicking, hesitation, etc. in the absence of positive clinical findings/test results can't be anxiety. Your feelings are real. The idea that you have ALS is, fortunately, not.

Many of us have dicey thumbs, what with texting, lifting and keyboarding. And how your fingers feel is not a harbinger that they will fail.

But we're not going to persuade you of that here, or you would have accepted your correct assertion that time (7y?!) is on your side. That, and a benign EMG, and no functional limitations.

Please do not post again till after your appointment.
 
Wow you certainly have something going on. I hope you find out what it is someday. I can't imagine living in fear of dying for 8-years. I wish I had some magic words that could put you at ease, but I don't. Please don't be offended, but do you have someone impartial who can talk with you about all of your concerns? I only ask because this type of fear can paralyze a person from experiencing other parts of their lives. We (most of us )are given a life expectancy from between 3-5years. If nothing else, take heart in that. You are still here, and you are fine with the exception of carpal tunnel, and maybe some arthritis.
 
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