Worried and would be so grateful for any replies

[affected]

That finding could be great in pointing to the diagnosis the doctor has given you. Great news really!

 

[Clearwater AL]

Moom, First sentence last post page one... "I’m not totally out of the woods."

As far as ALS goes you are.

Really no need to continue here... hope all your non ALS issues get
resolved. Live long and prosper.

 

[moominshouse]

Updating as I continue along…
Thank you for this. I did start to develop fasciculations and twitches throughout my body and began to fear my EMG (2 months ago) was performed too early, but the sticky here reminded me that your stance, as a community, is that that is simply impossible.

I returned to my neurologist to confirm the hyper-reflexia; her physical exam was more thorough than the spine surgeon’s. She noted no hyper-reflexia anywhere, then did basic strength testing, which was negative. She checked my tongue this time - it was twitching, but she attributed that to nervousness, because when she checked again a bit later “everything was quiet,” as she put it, no twitching.

She also said by now it would be progressing with twitches throughout my body and when I told her I do indeed have that, she also attributed that to stress and fear and reminded me an EMG is the gold standard. My EMG was shorter than ones I’ve seen here - less needle pokes, maybe 1 or 2 in each limb - and again, she’s an independent neurologist, not someone from an ALS clinic. But she worked at a clinic with PALS and is confident. She turned down my suggestion for a repeat EMG because there’s no indication on her end but said we could look again in several months.

She does want to check for other issues, however. I have a brain MRI coming up in additional to a cervical spine MRI. I am feeling a lot of fear given my dysphagia and chronic numbness in my left leg and twitching elsewhere.

Also, I had a repeat endoscopy that showed no reflux, but there were some rings, and my GI says he suspects a motility issue - also stress related, he feels. I’m worried about the incorrect attribution of my symptoms to fear. Apologies for my ramble!

 

[affected]

A short EMG means you don't have any signs of ALS. When the person performing the EMG begins to find evidence of ALS (or any other major widespread disease) they continue testing to see just how widespread it has advanced. When they test the appropriate areas and find nothing, they do not just keep looking and looking. So, your short EMG is a good sign of all the doctors have told you.

I hope you find answers soon, but I would encourage you to stop chasing ALS and stop googling it and coming here. Your doctor is best considering your issues and deciding on the diagnostic path. You can make it take longer to get to diagnosis by trying to suggest what should be done.

 

[moominshouse]

Continued update: I came to the emergency room because the heavy “falling asleep” feeling in my left leg got to be too much. I often have foot cramps in this leg too— Charlie horse cramps— and general stiffness throughout the left leg on and off (that is, feeling like I need to crack or pop my hip). They admitted me to the hospital & I’m awaiting a spinal MRI.

The neurologist here told me I should repeat my EMG if I’m having fasciculations, which I am all over my body, and now I’m convinced my left arm has atrophy too - and that arm has been feeling tingly & heavy (“falling asleep” feeling again), as well. I’m confused, because I thought having an EMG in august wasn’t too early - this neurologist said, “is it possible it could be the early stages of ALS? Yes, anything is possible.” My reflex exam was normal, so he said it’s highly doubtful, but now I feel very confused and pretty scared. My fasciculations aren’t visible to anyone else and my strength & balance test was also normal. They’re doing a swallow study as well. I’ll be here quite a few days.

Sorry for the ramble & to keep seeking communication here!. I feel like my own neurologist’s conclusion is being contradicted now.

Adding here , he also asked me to stick my tongue out and my tongue was full of tremors and he said he couldn’t tell if they were true fasciculations or just nervousness. At rest my tongue does not twitch. So confused! Will continue to try to get answers & update for other folks searching this thread, just experiencing some frustration/fear.

 

[affected]

Um, let's get this straight.
The neurologist did not suggest you may have ALS - you outright asked "is it POSSIBLE?" No neurologist will state things outright as they are worried about legal issues. so the closest they come is, well anything is possible.

No one gets diagnosed with ALS through an ER.

Please, don't post again now until you have a diagnosis. This is not good for you, and remember you are asking the terminally ill to support your fears. If you are confused, go get a medical second opinion, not an internet one. I say this out of concern for you and your mental health. This is not helping you in the least.

 

[lgelb]

I agree that you are scaring yourself, which can lead to hyperventilation, which can lead to tingling, "falling asleep" feelings, upset stomach, perceived difficulty in swallowing, etc. Often the whole constellation comes down to far-from-fatal conditions such as allergies or GERD, that start the sequence of hypervigilance when it comes to your body.

No one has said, thought, or suggested, that you have ALS or anything like it.

That does not mean that "everything is caused by anxiety." But anxiety does not help. I hope your hospital stay, which is not risk-free from an infectious disease point of view and possibly injurious to your bank account, convinces you to seek some help from a friend, family member, or counselor to put some of this in perspective. Health anxiety is not worth holding your life hostage to. When you get it under control, you're in a much better position to evaluate what physical issues are of concern and what are not.

Best,
Laurie

 

[moominshouse]

Thank you all so much for your honesty and clarity and I am so sorry to overstep boundaries here. Your insight is deeply appreciated. I will refrain from posting until I have a diagnosis. My sincerest apologies and serious gratitude.

 

[moominshouse]

I wanted to add, Laurie, thank you so much for that apt description of the sequence of hypervigilance. It’s been such a cascade.

Updating here especially for folks also scrolling through this part of the forum. No diagnosis as of yet. I’m realizing most of my leg numbness has now become severe cramping throughout my foot/calf— it’s so intense in certain muscles and giving me a bit of a limp. The cramping is now making its way up my thigh, and an orthopedist told me I have spasms in my lower back, based on an X-ray and a clinical exam. My lumbar MRI was normal, no herniation or bulging discs anywhere.

This makes me nervous (of course), as the cramping is increasing throughout my leg over the last few months. From my understanding numbness points away from ALS, and increasing cramping in one limb might point toward it(? perhaps an incorrect assumption). I finally saw my EMG results myself and they were indeed normal. That was at the end of August, when my leg cramps were barely there, just mild. Now they’re intense. My recent clinical exam was still normal.

As of now, my neurologist said the EMG might’ve been premature—with regards to something like sciatica. Is it the stance of this forum that there’s no such thing as an EMG done too early, for the detection of motor neuron disease specifically?

For now, she’d like me to go to PT and is hoping my pain and discomfort will improve. I’m baffled about increasing severe cramping with no injury. Thanks to everyone reading this - I’m writing with no expectation of a response, just making my way through.

 

[moominshouse]

Just reiterating - not seeking reassurance, but keeping this post active so that if I do find out what’s going on, it can be shared!

 

[Bestfriends14]

Please update the forum ONLY after you find out what's going on, and cease posting with every single update you can think of. You do not have ALS, so tying up the forum with unnecessary posts is not wise. Only one final update is fine so that posters who are needlessly frightened of a disease they do not have, can see why they do not have it via your experience. PT should help alleviate your cramping.

Take good care.

 

[Nikki J]

If your thread should close you may certainly start another to tell us your outcome. If you provide a link to this thread if you need to do that it is helpful to everyone. The rule is one open thread per undiagnosed person. Another thread is allowed for reporting outcomes when the other thread has autoclosed. You may have seen people told not to start another thread. Eiter they have an open one or their first thread was closed by a moderator for persistent unproductive posting and they start another of the same. We encourage everyone to report their doctor’s diagnosis. Everyone learns from that. Best of luck that you get one soon and itis good news

 

[Clearwater AL]

Moom, you've posted 12 messages, 26 replies and this has gone on for two pages.

Your next post really needs to be the diagnosis only. That's the only update needed.

Our extremely ALS knowledgeable members have pretty much assured you - you do
not have ALS.

Until then... find the will power to refrain until you have a diagnosis. Then... believe
that diagnosis, not coming back asking more questions of doubt. No one here will
dispute the finding or give any support to any more doubts you may have with it.

PS. For some strange reason you've had three thousand (3,000) views. Somewhat of
a following. Maybe a lot of folks know you, maybe from other sites you've posted on.