Questions About Symptoms

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New member
Jan 3, 2023
Learn about ALS
Hello all. Thank you you for all you do on this forum, both for the diagnosed and undiagnosed. I am in the latter category and have a couple of questions regarding particular symptoms. I have tried finding this info on my own, but, most times you end up with the same "abstract" study/finding that doesn't end up answering your question anyway. You all seem so knowledgeable and helpful that I feel I would obtain a clearer idea by asking you. I am a 30 year old male with no familial history of ALS and have always been in good health up until four months ago. I do apologize in advance for the long post, but would rather post everything at once rather than come back with "what about this, what about that?".

(1. Fasciculations: I read in both the sticky and on the BFS forum that fasciculations with ALS often go unnoticed by the person having them, and that they are often noticed first by others. I don't understand how this happens, as it would seem they would be fairly strong fasciculations for someone else to be able to notice them. Further, on the BFS forum, they mention that fasciculations with BFS can actually move limbs. My fasciculations came on suddenly about two months ago (approximately two months after being ill) and were (and still are but to a lesser degree) widespread. I did have tongue fasciculations, but they were infrequent and only lasted a couple of days. They range from mild "taps" to strong "thumps". When they happen, they hit the same spot 1-10 times before stopping, and sometimes hit several different spots at once quickly and in sequence (calf, thigh, back, arm, etc.). They never move a limb, but depending on location can "kind of" move a finger or toe. My fasciculations still happen everyday, always while at rest (sitting or lying down) and are mostly relegated to my calves and thighs at this point, but can still happen anywhere, though they do seem to have reduced in frequency somewhat. The fasciculation stops when I activate the muscle, but can return to the same spot upon relaxing the muscle. So I guess my question is, what are fasciculations with ALS really like? I know that them being widespread generally points away from ALS, but what do they feel like, if anything? Are they constant, or do they come and go? Does activating the muscle stop the fasciculation or does it persist with muscle movement? If muscle movement stops the fasciculation, does it return right after relaxing the muscle?

(2. Dysphagia and Other Bulbar Symptoms: I noted in the sticky that ALS isn't a scratchy voice, or food getting stuck in your throat. I also noted that note about "Globus Sensation". If bulbar ALS is not a scratchy/hoarse voice, food getting stuck in the throat, what is it? Can you suddenly just not swallow at all, does your voice suddenly not work, do you suddenly slur every word you try to speak? Does the weakness start in one side of the face/throat or does is it effect both sides at the same time? Is a "globus sensation" commonly felt in ALS? How does ALS make your voice sound "nasally"? In my particular situation, four months ago I was having heartburn and indigestion every time I ate, no matter what I ate, for weeks. Additionally, I couldn't "pull" air from my stomach to force a burp (I can still burp, but I can't force one by pulling the air). I underwent an Endoscopy with samples taken, no cancer or celiac disease but did find both acute and chronic signs of inflammation "in line with reflux. GERD likely". Around this same time, I developed a constant feeling that something was in my throat (phlegm) and that I needed to clear my throat constantly. The throat clearing was always "dry". PPIs and other acid blockers seem to have no effect on the throat sensation or clearing/cough (the heartburn itself has not reoccured for about two months). As of the last week or so, it feels as though the left side of my jaw is "tired" or weak, and it feels like the back left side of my mouth (around soft palate) isn't working, nor is part of the left side of my throat, and my voice sounds both hoarse and nasally compared to normal, especially when speaking at lower volume. I constantly feel the need to swallow, and when I do, I can feel the "swallow" all the way down, and then I hear what sounds like an air gurgle that moves back up in my throat (this doesn't happen with water or food, just when I swallow saliva). I am aware that GERD can cause some of these symptoms, but, it seems odd to me that these symptoms would worsen fourth months in, while the heartburn has stopped (even without medication, there is no more heartburn). Speaking of which, does Bulbar ALS sometimes start in the lower/upper esophageal sphincters/muscles causing heartburn/reflux? I read in one post on here that someone's first signs of Bulbar ALS were thick mucous, hoarse voice, and clearing throat (I didn't think to take note of the post for context, sorry).

(3. Limb Issues: ALS is about failing, not feeling. My initial impression was that you would gradually feel weaker as the disease progressed, but, as I understand it after reading the sticky, that isn't the case, and you simply can't do something anymore. I have some confusion in this regard, as I have seen different things from different sources that say things can become more difficult (for example, running can become difficult initially, then, as the disease progresses you can't run, but might still be able to walk). With regard to the sticky, what is "failure"? For example, is failure in a leg meant to say you can't do anything with that leg, or that you can't do something specific with that leg? In my situation, I haven't had any "failings", but my left and right legs (mores the right leg) "feel" weak, as does my right arm and have felt that way for about three months. I haven't tried anything specific to test for "failure", but I can still do everything I normally do, just with seemingly more difficulty. I have had intermittent shakiness/tremor in my legs when standing still, as well as a shake/tremor in my right index finger but only during specific movements (such as using a mouse).I did have some cramps in my right leg beginning early last week (both in back of thigh and calf) and the leg does feel even weaker after that (cramp feeling lasted about a week). I should note that these cramps weren't the type where your muscles contract and cramp, but were the type where you had sharp "cramp-like" pain, burning, and tingling. The cramping has gone away, but the stiff/weak feeling has not. I did have a CT scan several months ago that noted a slight herniated disc at L5-S1 and "mild degenerative" changes which I am told are very common at my age. I went to a chiropractor and he said he doesn't believe the cramping, burning, tinging is from the herniated disc, but more so an issue with the piriformis muscle and weak surrounding muscles (this worried me, of course) which I thought odd as I have always been "strong" and active. He also asked me why my quads were so tight, for which I couldn't give him an answer, as I didn't even know they were.

Other issues I have/had that began between four months ago and last week that were not noted above: extreme fatigue (daily), sleep issues (nightly), erectile and bladder issues, eye issues (left eye loss of acuity, right eye seemingly permanent floaters), back pain (lower, mid, and near shoulder blades), mouth and throat feel dry even if they aren't, 25lbs of weight loss over 70 days (starting around time heartburn started four months ago, weight has since stabilized), slight cognitive issues. Mostly short term memory or very specific recollection issues. Also have trouble focusing, and have a hard time finding energy and mental fortitude to anything, much less anything productive.

I am sorry for the many questions, but I am just trying to get a better understanding of some of these specific types of symptoms rather than simply asking you "is this ALS"? There is so much different information out there, and most of it is either in abstract notes of a study or generalized information stating possible symptoms even ones that are very rare/low occurrence. I have been to the doctor many times (probably 30 times over the last 4 months) with no answers. I live in a rural area, so healthcare isn't the best and is very slow. I was referred to neurology in the last week of December and can't get in for the initial consult until April 13th (though, I am hopeful that the other specialist visits may speed up my appointment or find the issue itself, as I also have referrals to ENT, Cardiologist, and Urologist). My Dr. is basically throwing things at the wall to see what, if anything sticks at this point. Out of the myriad of tests (blood, urine, stool, imaging) I have had over the last four months, the only things that stuck out at all were that I was positive for both Cytomegalovirus and Epstein Barr antibodies, which don't tell if it is an acute or past infection, and that I have a small hiatal hernia, GERD is likely, and slight degenerative changes and mildly herniated disc at Least L5-S1.

Again, I’m very sorry for the long (and presumably meaningless) post. I know how valuable your time is. I’m just in diagnostic (really pre-diagnostic as it relates to neurological issues) limbo and have been increasingly worried since the slight tremors, mouth and throat issues, and near constant fasciculations started, especially given the extensive testing/treatment done with no finding and length of time that has elapsed. I know that you can’t and won’t attempt to “diagnose” me and that you are not here to console, but I would just like your opinion and any clarification you can provide.

Thank you again.
Hi there- sorry you find yourself here.

You list a whole bunch of issues not at all related to ALS. It seems like you may have picked a couple things (particularly twitching) and focused on these instead of looking at the whole picture your many different non MND related symptoms might point to. Doctors look at whole patterns of symptoms instead of just singular issues (and ignoring the rest), and what you relate just wouldn't indicate ALS.

It might be hard to wait til your neuro appt, but that is what you must do, as you may be doing yourself some harm (stress/anxiety) by focusing on a disease that doesn't present as you outline. If you wish to try to get in sooner due to your fears of ALS, you could maybe call the neuro's office and ask to be placed on their cancellation list. It can help if you provide how much/little notice you need.

It sounds like you're also seeing other specialists too. Hopefully you will get some answers from these medical professionals that will help in your search for wellness.

Take care
Thank you, ShiftKicker! You are right in that I did "pick" some symptoms and focus on them (particularly the twitching, muscle, and mouth/throat issues as these are the ones that scared me the most and "came out of nowhere"). I second guessed myself for days on posting this because I didn't want to waste anyones time, but, this has all been so weird that I thought reaching out might shed some light. And I'm sure you guessed, Dr. Google led me here.

You mentioned that Doctor's typically look at things in the big picture, which I guess is part of what has been bothering me. I've seen several different doctors here (including my PCP numerous times) and they seem to be the opposite. When I list what I am feeling, they seem to selectively pick a symptom and look at that individually. To his credit, my PCP is the one who did the referrals, which at least indicates that he is listening, at least.

Nevertheless, I thank you very much for your time and for you reading my post.
Hi and wow that post is a whopper!

1. twitching means nothing, so what they do or don't feel like really won't mean anything

2. ALS sounds like slurred speech, like the person is drunk. Swallowing difficulties begin with thin liquids like water.

3. The failures are described pretty well in the sticky. If you feel weak but can still do anything, that isn't failure. If you are examined by a doctor who finds clinical weakness, that is a failure of a kind too. Feeling weak is not a failure and does not preceed failures no matter how much you think it will.

I don't see how your healthcare can be too slow if you have seen doctors 30 times in only 4 months!
I can see how frustrating this is for you. However apart from the GERD symptoms I also don't see anything of major impact happening, especially to think you are dying. Definitely I am no doctor but you report twitching, cramping and GERD symptoms and that is being investigated with the referrals, as is ruling out any cardio reasons.

You really are not up to figuring this out because you cannot diagnose yourself nor test yourself. ALS is never diagnosed by you saying you experience or feel this or that. It is diagnosed by a doctor conducting a clinical examination that finds evidence that is then backed up by the results of an EMG.
I truly mean this - if your doctor had found any evidence on exam that you have ALS, you would be seeing a specialist way faster. Waiting til April is great news as it means you don't have evidence of anything sinister.

I hope you get to see the ENT soon and sort that stuff out, but please don't dive any deeper into this rabbit hole while waiting. Instead, research the best diets and anything else you can do to reduce GERD stuff and try that in the waiting time.
Edited/removed... better composed/answered above.
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Thank you very much, affected. I appreciate your clarification to several of my questions! Other than feeling like I am "gulping" liquids, I am not choking or anything of the sort, so that's a plus.

I suppose 30 times in 4 months doesn't fit will with slow, lol. I should have noted that I meant specialists (neurology, cardiology, urology, etc., we don't even have ANY of those specialities here), and "non-routine" blood work can take two weeks since the lab here doesn't do much of anything beyond basic blood tests.

I really, truly do appreciate your kind words. My Dr. did kind of work me up during my last appointment when he referred me to Neurology because he said "things like Myasthenia Graves and ALS are out of my wheelhouse. Maybe you have some kind of ghost covid". Maybe I misread what he was saying, but that seemed like a really strange thing to say to someone who hasn't been feeling well for four months and is clearly distraught about their condition.

Again, thank you Affected.

Thank you Clearwater AL, I went back and forth on posting this for a while, mostly due to its length. Regarding "presumably meaningless", I did not mean that post would be meaningless, just that a lot of information I provided likely would be. I'm sorry to have wasted your time, and I appreciate your input.

Unless and until I receive other responses, I will be logging off.

Thank you for your time.

Much love and respect for you all.
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