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Nov 26, 2019
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I’m still here. I wish I was totally back to pre ALS fears but I’m not.
A little update on what’s going on, I still have the twitching/rolling of muscles. I have what I feel like is slurring but my husband said he’s not sure. I have difficulty swallowing, not every single time I eat but a lot of the time. I have lost a ton of weight and muscle mass. My muscles shake uncontrollably whenever I try to engage them. Driving is very difficult and recently I’m not doing it anymore because when I try to push on the petal my leg shakes uncontrollably and gives out.
Has anyone else had their weakness present that way? All of this combined with the worsening swallowing/speech and lack of strength has be reeling.
MRI didn’t show anything. He said I had a herniated disk but it isn’t compressing on any nerves and is very small and isn’t the cause of any of my current symptoms.
My doctors aren’t sure of what is happening. The doctor that performed my EMG is consulting with a neuro movement specialist to see if she has any clue, but I am sadly still a square one.
The massive shaking of the muscles when trying to use, has anyone else had that happen to them? It’s like if you were trying to life something really heavy, that sort of reaction. I took a video and could attach it if that would help.
If you have more bulbar issues, does it at some point show on an emg of the body or is that not seen until it’s already known before affecting the body?
I have a call into Mayo. I live in the Midwest and have stumped my docs here, so they think referring out might be our next step. It’s a very scary place to be, and at this point I’m just really sad and scared.
(for the shaking/weakness, I’m not on any meds so it’s not due to medication).
I know no one can diagnose over the internet, and I know everyone is different, I’m just wondering if anyone else’s experiences are similar or have dealt with anything like this.
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Please let us know how your neurology appointment goes. Until then, unfortunately, anything here would be speculation.
My last neuro appointment he took some videos of it and said he’d send to the doc, it’s just so infuriating because to get in to the other doc I’m waiting another 5 months. Meanwhile my life is being turned upside down.
And thank you for attaching my previous thread. I wasn’t sure how to do that.
Does anyone else have any experience like what I am having?

Two replies that may be important to re-read:

You've received so many replies already in previous threads over the last 3 years. Again, for anyone to answer, it is strictly speculation and does absolutely nothing to get you the real actionable answers you desire. Unfortunately you must wait and work with your doctors. Crowdsourcing a possible diagnosis of a complicated set of symptoms that do not indicate ALS to any of your doctors or the people who've answered you previously here is not going to be very fruitful for you and will likely result in frustration for all involved. I really do sympathize at the lack of answers you've received about your condition, however, this forum is for those who are diagnosed with ALS and can't be used in the way you seek to use it.

Hopefully your next medical appointment will be more informative for you.
Please remember the audience you are using to soothe your health anxiety. These are terminally ill people (who actually have this insidious disease) and their exhausted caregivers. At this point, quite frankly, it's cruel to keep coming back time and again asking to have your hand held for issues that have nothing to do with ALS. Try to think about that before you post a 40th message and your questions roll into a third and fourth year here. You simply are not going to get diagnosed with ALS no matter how much you seek to do so.

I'm sorry you have the issues you are having, but they don't correlate with disease. It's well and truly best you move on for your own mental well-being. It's clear this forum is fuling the fires of your anxiety rather than putting them out.

Take care and I hope you are able to get to the other side of your illness anxiety. You'll be much happier if you can achieve that. I'm sure of it.

Best of luck to you.
Your doctors who have seen you have not been able to give you answers. That is beyond frustrating I am sure. As others have said before your symptoms don’t sound familiar. We truly don’t know and can’t guess what is wrong but pursuing on the ground opinions is your way forward. I hope you are getting support as an extended diagnostic process whatever the end result is very stressful. Please do let us know what Mayo says
Yes I very much remember the audience of this page, my intentions would never be to be cruel. That’s also why I’ve waited so long to update as I’ve never wanted to take up excess time. Do I think I have some anxiety related to my current health, yes. Do I think it’s causing all my symptoms, no.
That’s why I was mainly asking if anyone else has had anything like I’m experiencing as the doctor loop isn’t getting me anywhere fast. It’s a very scary isolating place to be so I was just seeing if anyone else was/is in a similar spot.

Thanks for the hope for well wishes. I don’t have an appointment at Mayo yet, and my neuro is a long ways out, but I pray I get answers soon, and good reports.
It must be very frustrating to not have answers. I understand. I do hope you can be seen by Mayo since they have a team of doctors in various specialties so you will be referred to those that are most appropriate.
It is maddening to have a bunch of symptoms that doctors cannot explain. I understand that frustration. It sounds like something is going on but if you were already symptomatic when you had that normal EMG, that would weigh against the feared 3-letters. Nothing is definite with this disease but that is pretty close. As suggested above, the best thing would be to consult with your neurologist - Mayo is excellent if you can get there, but any neurologist. In the meantime, try not to overstress about it, even though it's easier said than done. Diagnostic limbo sucks, but if you let it take over your life, as one poster said here, you end up paying the toll twice. I was in diagnostic limbo for 1.5 years, and I struggled with it at first, but eventually was able to wall it off, and actual enjoy my life, knowing that if I had to deal with something eventually, I would cross that bridge when I got to it. I'm happy I did. If you can possibly get to that place, that is best.
Just an update. Still no new news on the Mayo front, still awaiting an approval for appointment.
My speech has continued to feel diffucult, mainly my tongue, and I have issues with swallowing at most every meal, so my neuro is sending me to his speech doc for an evaluation and swallow study.
I know there are many beautiful wonderful people with this disease, and I’m not immune to getting it, but man this all just feels so heavy to bear and just mind blowing. I pray for answers of something, anything other than what I fear.
So that’s the update I have for now. Swallow will be next week and Mayo, who knows but hopefully an approval soon.
Please report back AFTER you've met with a neurologist and been diagnosed with whatever you may have going on. You've been cleared of ALS on multiple occasions, so I'm not sure what you would like folks here to give you as answers. We can't go against medical professionals, so what everyone has answered over the last 41 posts, can't be expanded on much more. The only thing I can say is to go live your life, cherish your loved ones, and stop surfing ALS forums. Surfing forums is only going to exacerbate your health anxiety.

Just a side note, in the 3 plus years you've been desperately chasing ALS, you have lost zero function in the interim. My husband, on the other hand, has gone from walking, to being a quadriplegic with one semi-working arm, to being fed, and to being on non-invasive ventilation 24/7. You have lost no function and can do everything you could years ago. Everything you mention is "feels like" not "I can no longer do." See the difference?

Best of luck to you. Again, please report back in a few months when you've met with the neuro and they've given their opinion on what they think is going on.
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Feel free to check back in with a report on the swallowing study results, but agreed, it is not productive to post in the absence of new clinical findings (positive or negative). Please do not do that. It merely confirms your anxiety.

I don't know from thousands of miles away what the extent of your objective physical deficit is, but it's progressing slowly and there is no need to speed it up, nor to jump to the conclusion, absent more evidence than you or we have, that it is life-threatening.

On the other hand, P/CALS are in fact living with a disease that they know to be fatal. If you, as you say, are sensitive to the audience here, you could possibly imagine that P/CALS who see that you have been posting for nearly three years, a timespan in which many PALS have been diagnosed and died, could be prompting the negative emotions that are being expressed.
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