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opusensemble

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Dear friends,

My story so far was an impressive story of fight for survival.

5 years ago I had a severe adverse reaction to an antidepressant and became bedridden and in extreme suicidal agony for 4 long years. My research was too incredible and extense to condense in a thick collection of books. And incredibly, in 2017 I was able to conquer the severe treatment resistant depression, against all voices from more than 20 doctors, that claimed like quacks that DBS surgery was my last hope, and I proved them all wrong, and was finally free from psychiatry.

I was back to life and thankful to God that I had been given a new lease on life.

I am Portuguese, male, 41, and got a temporary job in Canada last winter and went there extremely optimistic about my future.

Little did so know about what was about to happen. In January this year, the day I was dismantling the stage backdrop in a Toronto's Exhibition Center and I noticed that my left thumb lost its dexterity. Back at home I was coding and noticed that the dexterity loss was severe as I could no longer use that thumb on the Ctrl key which effectively handicapped me from doing computer work, as I had extreme difficulty getting used to that new reality.

That symptom persisted and although the dexterity was regained in the weeks that followed, that thumb and hand became stiff ever since, and i found myself with extreme difficulty moving my left leg. I recall walking 2km at late hours to Walmart to buy Aspirin, thinking I was having a stroke. I took several Aspirin pills but the symptoms were unchanged.

A full month passed and the symptoms were constant stiffness in my left hand and left foot. I had no access to healthcare in Canada so came back to Portugal and did an MRI which was clean. I assumed that I probably just needed to rest, and since April I've been essentially in bed, avoiding stress as possible, eating the best I can, doing gentle exercises, and waiting for my symptoms to go away.

Meanwhile things only got worse. Over the last 4 months the stiffness spread to my both hands, feet, calves and forearms, with this strange sensation that my toes and fingers are curled although they don't look like curled. I still have normal range of motion and strength and have no noticeable signs of muscle atrophy but I feel incredibly stiff. I have no hyperreflexia or slurred speech that I or others can tell, and my family wouldn't be able to guess that I feel so stiff as I was very sedentary for years due to the depression so they don't notice anything wrong with my movements.

How I perceive it is however entirely different. I am not depressed, and basically unable to work for 10 months now because of this problem.

Last month I did a full spine MRI which showed no spinal cord lesions or compressions and a veey complete bloodwork panel from STDs, to thyroid function, to electrolytes, to vitamins and minerals, to antinuclear antibodies, CRP, etc and only my testosterone had the levels of sick 100 year old: around 215. I started taking some supplements and exercising more and discarded it as likely cause of the stiffness.

Coincidentally, over the last months I have developed crazy stiffness. All muscles below my neck, specially in my limbs have started twitching in some random areas, then fasciculating frequently too, and above all developed a low grade buzzing sensation, which I describe as electrical fibrillation in my left foot, left leg and left hand mostly so far. But the twitching is spread all over and tends to be accompanied with localized fasciculations in random muscles. This constant twitching and fibrillations make me feel my legs wired constantly, and if I could count them I would probably have some 30+ events like these per minute below my neck, from subtle sensations to noticeable visibly. To the point that they are keeping me awake at night.

I have no other symptoms so far. Before this avalanche of twitching and fibrillations increased in intensity I was still thinking that it could be MS, but with clean MRI scan it all points to ALS now.

I have found easily on Google several ALS stories that started just like me, with stiffness and twitching. And specially after having seen a research article that mentions EMG fibrillations as an Hallmark of ALS, I guess this is too obvious, and although I didn't have an EMG yet, my intuition tells me that in the moment they stick electrodes do my muscle, all sorts of electrical fibrillations will be picked up in a very dirty chart.

I never felt my body like this and feel I am deteriorating very fast, as if my nerves were dying and melting giving signs of fibrillation while the connections to the muscles die-off. This is the best I can describe it but seems very consistent with the whole process of ALS progression. Intuition tells me that soon I should start seeing increasing stiffness from my knees up, reduced muscle strength and atrophy.

I believe the next logical step is to get an EMG done, but the diagnosis appears quite clear at this point.

I would like to get the empathic opinion from the fellow sufferers in this group if you could be so kind, about the likelihood of a positive diagnosis after EMG.

Thank you all,
Joao
 

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lgelb

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I don't think there's any point to speculating what you might or might not have without an EMG, though without weakness or atrophy, ALS is at the very bottom of the list.

But what's missing here is what your doctor(s) have said and observed. They are the ones who should shepherd you through a diagnostic process to find if there is a current issue or residual effects from what you have experienced in the past.

Best,
Laurie
 

Nikki J

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You CAN NOT feel fibrillations. Period. A buzzing feeling has nothing to do with EMG fibrillations. Zero. Muscle fiber fibrillations can only be detected on EMG
 

opusensemble

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You CAN NOT feel fibrillations. Period. A buzzing feeling has nothing to do with EMG fibrillations. Zero. Muscle fiber fibrillations can only be detected on EMG

Thank you Nikki.
I mentioned fibrillations from the electric signal analogy speculating a paralelism exists between the buzzing and the fibrillations captured on EMG. Maybe these are two separate eletro-sensory-physiological entities.

I definitely have the buzzing though coupled with all the regional repetitive twitches in separate limbs (quite different than random twitches all over)
 

ShiftKicker

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Opus, it's important to understand the difference between sensory (buzzing feeling) and motor issues (loss of muscle use). Please understand an absolute statement about knowing you have ALS despite no clinical evidence is not helpful in any way and does not lead you towards a diagnosis of any sort, let alone a rare neuromuscular disease. Working with doctors and letting them guide you in exploring cause for symptoms is really the only thing you can do.

I do not think anyone here would agree with you about your assumption you have ALS, and we really aren't the people you need to convince. The only way to definitively find out is to get proper in- person medical attention. You have a very complicated health history and it's not for strangers on the internet to untangle as there are many issues that seem to be contributing to your current situation.
 

KimT

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Nothing you presented sounds like ALS.

You might not be depressed but you have severe anxiety, which can come from depression.

You definitely cannot feel or detect fibrillations. Many people have fasciculations and they really don't point to anything as they are so common.

Work with your doctors.
 

opusensemble

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Hi Shiftkicker,

Thank you for your words and please allow me to append some comments.

I understand that this forum is an extremely sensitive online resource, and it personality took me half a year to dare even placing my thread here, after reading the "read before posting" thread and many other anti-hypochondria resources, as well as reading countless cases of DIHALSers here that strickingly don't fit even remotely the patterns of variability of the illness manifestations.

I should however rephrase my case presentation as I probably passed a wrong idea about my health history and current symptoms:

It's true that I went through several years of severe depression but my case was simple intolerance to psychiatric meds. I abandoned all drugs and in a very short period taking only Magnesium Threonate, I regained my life and total well being. Went from being suicidal to full well being in less than a week with a (not so) simple magnesium supplement which I don't even rely upon now. I considered myself essentially healed from depression for 1 year when my limb symptoms started and although I was out of condition physically due to the multi-year physically inactive lifestyle, I didn't think I was sick either.

It was the stiffness in my left hand that since January 2018 propagated to my both hands, forearms and lower legs and feet with increasing degrees of stiffness and limb area reach, coupled with the increasing twitching and buzzing and perceived fasciculations in different muscle groups, what at my eyes is part of a single disease entity and corresponds to my only health complaints.

I refrained from posting in the forum telling myself since January that I wouldn't consider ALS, and after reading so many strickingly hypochondriac cases in this forum, I absolutely wanted to avoid resembling one, at least until my symptoms were totally severe and debilitating.

Medical iterations in Portugal are slow, even paying out of pocket waiting lists are long, and I didn't even dare to talk about ALS to my doctors as there is so much stigma that this new generation became empowered with the internet that all I did with them so far was rule possible ALS mimicking conditions with bloodwork, the MRIs were my attempt to find out if my symptoms were MS, as I couldn't think about the panic of conceiving it was ALS.

But the more I kept it out the equation more clueless I felt. In MS groups people didn't relate much with the stiffness as I presented it, and the twitching and buzzing even less, so ALS was mentioned several times to me by many MSers, and only then by looking for random stories of ALS, I realized that stiffness and twitching are incredibly common ALS early simultaneous symptoms, and am under the impression that the requirements for muscle weakness, atrophy, hyperreflexia or slurred speech are more senior symptoms and IMO a very limited set of early symptoms, telling from so many personal ALS stories how things started from things as "simple as stiffness and twitching".

This symptom combination (stiffness + twiching) seems to be incredibly common in ALS first signs. And I could not find any other condition "safe harbor" I could relate to. Not that I didn't tell myself countless times that it had to be something else and I just needed to find it.

I hope you understand me better now. I am not expecting to get a diagnosis here either but thought I could benefit from the insight of the veterans. Waiting for an EMG will still take me some 2 months and by then I will be almost 1 year essentially bedridden.

I am so exhausted of suffering and living in the darkness in terms of physical freedom as if I was already tetraplegic although (and this is how this sounds offensive to ALSers with Dx) I can still walk for a while in a treadmill if needed. It's how insidious this limb stiffness is. Calling it paralysis is an insult to most of ALS Dx cases. .

But saying I am well is a gross misrepresentation too. I am spending 90% of my time in bed for 10 months now. And have an extremely active personality trapped inside this body with stiff and twitching limbs. I feel extremely desperate and be it ALS or not I just wanted to find out what it is.

For instance, in attachment I send a picture of my legs. Any hypochondriac would probably say they are atrophied. I know I have not been physically active for 5 years so am not expecting that they are the Pinnacle of good looks and accept how they look without panicking.

But this limb stiffness and constant twitching is so insidious that they raise the same red flags to me as obvious advanced symptoms so had desperately to ask for opinions. I have also been feeling some 20% difficulty in breathing but am just referring what I imagine any tough guy with big balls would mention at a point they couldn't take it anymore.

Like most of you I hate people that have no capacity for not sweating the small stuff, filtering information and staying objective.

But it's the fact that the combo "stiffness + twitching" is mentioned so much in personal ALS stories and the extreme impact in my life, turning me in practical terms in a 90%+
of time bedridden person for full 10 months now and gaining traction, what caused me desperately to seek for anyone that can relate with my symptoms, be it ALS or not ALS.

I still have to wait 2 months for the EMG and I feel extremely lost and alone, desperately needing for a voice of wisdom, a friend, someone, a guiding voice.

Please forgive me if I offend anyone. I am thankful that this platform exists as with you I am not just a trapped mind in a lost dark room somewhere in a remote village in Portugal unable to understand what is happening to me.

Thank you for letting me connect. I couldn't have more respect for anyone as I do have for you.
 

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opusensemble

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Hello Kim

I am thankful for your reply.

It's not exactly the twiching that bothers me. My body twiched funny at night so many years back in my youth. I used to find it relaxing back when i had just a couple of them occurring at bed time.

This is a quite different level of twiching. My limbs feel like lights on a Christmas tree with fireworks on top. This electrical festival is going on for at least 6-7 months now.

Yet I think I would be able to survive it. It's not my main complaint at all. But It's the fact that it's coupled with increasing constant stiffness spreading insidiously from my extremities towards my torso. Everything below my knees and elbows feels incredibly stiff.

I have so much respect for whoever lost their motor function and feel so guilty for feeling like them even forcing myself to move and appear normal to family while saying I feel so stiff that i describe it as being paralysed. They feel offended because they see I can still stand and walk and move but feel so trapped in my own body unable to understand or have understanding about what's going on.

Between a few hard to obtain doctors visits, first exams, online forums and 10 months wait, the combo of severe "stiffness + twiching" brought me here after what seems a negative MS diagnosis.

It's this stiffness that is destroying me. I don't know what to think. Waiting for the EMG is probably less distressing than feeling already so trapped in my bed.

Thank you for being there
Sincerely,
Joao
 

Bestfriends14

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Please continue to work with your doctors as nothing you've described sounds like ALS onset. I'm not sure where you've read your info on ALS, but twitching on its own means nothing. Stiffness can be helped by stretching and physio if need be.

The hallmark symptom of ALS is failure. Inability to open bottles, do up buttons, hold chopsticks or take a heel to toe step are some examples. Again, you've described not a single thing indicative of ALS onset.

Good luck to you and take good care.
 

Kristina1

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What you've written does not sound like ALS. Muscle stiffness and twitching are like headache or abdominal pain-- there could be literally thousands of reasons for them. They are not distinctive to ALS, not even when found together, unless you have the hallmark symptom as Bestfriends mentioned- weakness causing failure. It's also not for you to self-diagnose the kind of stiffness found in ALS. Your muscles can "feel stiff" without you actually having spasticity or hypertonia. When I walk I have the "zombie walk" where my leg muscles are so stiff that I cannot bend them properly to walk, so instead they swing rigidly from step to step like im walking on a pirate wooden leg (only 2 of them). Only a neurologist can test to determine if your stiffness is clinically significant.

Anecdotally, I did not have fasiculations until long after weakness had developed, and then even after I was diagnosed it took perhaps 6 mos to a year to spread from the two body parts (my 2 weak areas) to other areas. Twitching is not a likely "first symptom" from my experience and the stories of other PALS.

I do not think you have ALS. But you need to rely on your doctors not on us.
 

Atsugi

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Joao, get out of bed. Physically, laying in bed too long each day for too many days will make you stiff, weaken your muscles, reduce your testosterone, make you very tired very often, increase your blood pressure, and put you at risk for a life-ending embolism.

Psycho-social effects of laying in bed long-term are isolation, depression, reduced cognition, low self-esteem, and an unrealistic view of yourself and your situation. Others will treat you as disabled and you will, in turn, treat yourself as disabled.

Laying in bed will make a person both physically and mentally sick.

Something you might have missed while reading about ALS:
- In the end, and nearly always in the beginning, when failure happens it is a flaccid paralysis, a total LIMP muscle. The muscle lays limp and flaccid, unable to move itself. However, if someone were to pick up a paralyzed arm and toss it to the side, it would flop uselessly like a rag, because the brain is unable to trigger the muscles.

Not all depression is the same. You don't have to "feel" depressed to be depressed. If you are unable to get out of bed but your legs and lungs aren't broken, you're probably depressed. The body and brain are not acting at normal speed and strength. That can easily be depression.

You already know that our minds tell our bodies what to do. Most of what the mind decides, we never know. Most of what the brain does is done unconsciously, without us ever having any clue that the brain is doing it.

Go back over your posts and count how many times you used the work "feel." Your minds choice of words is trying to tell you something. Looking over your posts, it is possible that your brain is doing much of this to you without you knowing.

What's the difference between a person who cannot work and a person who is certain they cannot work? Both don't work. You are already disabled. Your government or healthcare insurance system might pay for you to get that diagnosed and fixed.

As you have absolutely none of the markers of ALS, you need to forget about ALS. Don't waste your time here. See your primary care medical doctor. Good luck.
 

opusensemble

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Mike, Thank you so much for such comments

I was at first relieved in disbelief to read what you wrote and how you wrote it. It was the kind of strong hand advice tone I could have used in other circumstances in my life. I am grateful for having deserved such words.

Yet, in the context of using this forum to discuss the different manifestations of the illness onset, the problem with me finding any temporary relief in your and PALS comments above is that in my particular case I can easily stumble upon descriptions of ALS first signs that non necessary mention weakness or atrophy as early symptoms.

I attach some images. Wikipedia mentions muscle stiffness and muscle twiching as early symptoms before weakness onset. (I know it's a very basic resource but I show it exactly because of that). And have found testimonials in random places in the internet where stiffness in limbs or loss of dexterity in one hand for example was how things started, only to be followed months later by muscle twiching (not necessarily fasciculations), and only then the muscles started atrophying with or without fasciculations. (All this is at least a possible scenario. I've seen it described like this in several Pubmed articles and other sources: doctors videos, testimonials, random websites)

From a lot of literature this seems to be quite common. Not as common as limb weakness onset but looks to me as significantly frequent not to be ignored. At least 10% of the ALS testimonials I have read seem to match this symptom onset sequence.

And this is one of the difficulties that reading the sticky thread in this forum and reading the comments you and other PALS gave in my post, brings me: The fact that the sticky readme in terms of initial symptoms, like your opinion seem to bypass some of the references online and some testimonials of ALS cases that seem to have started with insidious stiffening, followed by muscle twiches for a while, before the more seasoned symptoms of weakness and atrophy show up.

I believe this is the big confounder. And I totally understand that you might have started with clear signs of weakness and muscle atrophy and the tendency from PALS might be to consider that something that doesn't show up with clear hallmarks it's just an exaggeration.

But the more I have been reading about ALS the more I am convinced it's totally reasonable that my symptoms absolutely match a variant of how ALS shows up.

Specially when I consider the list of differential diagnosis (attached) and realize that one by one, none of the other options make sense based on my exams and tests done.

If I don't have ALS I must have what I will coin "opusensemble syndrome" because there is nothing else to check. That is the dilemma.

After I do the EMG to all limbs I need to not rush myself in doing any nonsense l, and need to come back to this thread so I can contribute for this forum accuracy.

Even if there weren't sources online mentioning that stiffening and twiching can absolutely be the first symptoms, I have known my body for 41 years and what my intuition tells me is the following:

1) In the last 2-3 weeks (and I just learned this) I have lost about 4% of my body weight, with zero changes to my life, breaking below BMI 30 for the first time in the last 10 years. Considering I have been having twitching fireworks day and night in my muscles for the last months, intuition tells me I am experiencing generalized muscle mass loss although I can't exactly pinpoint where it is happening. Probably distributed throughout the body.

2) Looking at my feet (image attached) they look like I don't remember. They look thin with narrow fingers. My feet used to be slightly puffy the last 10 years. It's hard to believe that age can be responsible for that. Considering I have been feeling them super stiff for 10 months, all this adds up to my strong belief that I have no other forum to go.

3) Then we have the "fibrillations" controversy. I have read what was said above about fibrillations not being felt by PALS. Yet, in some literature they will be easily mixed in the symptoms list. Even if that was not accurate, if you see examples of EMG exams being performed where fibrillations are present, you'll realize that the popcorn sound they generate has intervals that match what can be described as electrostatic charges in the limbs (which i do feel) or eventually as buzzing symptom (which I also do feel). And I am specifically mentioning the word "feel" because the sensory nerves are intact in ALS.

I couldn't find reliable sources to prove me right or wrong about the fibrillations but through intuition I postulate that fibrillations can absolutely be felt by PALS (in my case I am convinced I absolutely feel them as tiny focal microcurrents, as if my legs' hair was picking up electrostatic charges. Except that it's felt under the skin, simultaneously to all the generalized visible muscle twiching going on), and the rationale I use to hypothesize that is:

a) sensory nerves are preserved in ALS
b) with the muscle in resting state on a healthy person, the baseline EMG signal is approximately silent.
c) in a muscle of PALS in resting state, the fibrillations have the form of fast sharp waves. These waves can be tenths or hundreds of miliseconds apart, and are electrical signals that have associated electrical and magnetic field and can absolutely be picked up by the sensory nerves the same way we are able to feel electrostatic charges.
d) electrophysiologically speaking, fibrillations are nothing more than the muscles losing CNS connection so makes absolute sense that they precede or accompany atrophy and weakness onset.

For these reasons I have of course (to my total despair and seeking to do final arrangements in my life), self diagnosed myself with ALS, before the EMG, and before clear atrophy or obvious weakness present.

I would of course rejoice to be proven wrong in my rationale above. But that would totally against what intuition and objectity is telling me.

I have read patents of biomedical devices in the past and made a prototype of the talmedical.com's LFMS device and concluded it was a failed theory even before they even finished the clinical trial. And almost finished a prototype of a rTMS machine at home ( this was a page I kept while doing it facebook.com / rtmsdev
So from my technical background, I had enough contact with electrical / eletrogmagnetic devices to realize the EMG principles are extremely simplistic.

It's a simple antenna picking up and amplifying microcurrents. The sensory nerves absolutely can pick up fibrillation spikes as they come with eletrical and magnetic fields. The big fallacy would be assuming they didn't.

So I believe someone needs to properly document the fibrillations issue for the sake of accuracy and benefit of others.

Also, I don't think based on what I consider unbiased attempts to understand where truth is, that there are references that documents that insidious limb stiffening and twiching cannot be a manifestation of early onset. The same way I couldn't find any reliable source claiming that fibrillations can't be picked up by the sensory nerves.

I totally understand you when you say that ALS is characterized by failure of muscles and atrophy. And we all can recognize it when we see it. But there is a path to get to that point, and I can't explain my physical situation through the differential diagnosis in any other way.

And with the 4% weight loss over the last 2-3 weeks, nights unable to fall asleep with my body twiching all over for almost a year getting worse worse and worse, with all exams clean so far and EMG waiting, I am over the edge not even sure if I should see an ALS specialist or just wait that the obvious atrophy and weakness shows up. After all at that point any GP will easily see it. All this EMG sophistication and expensive neurologists specialists is obvious to be in vain at this point.

I believe the EMG is such a primitive test that anyone with any electrical principles background would learn how to interpret the body signs, instead of requiring such formality.

I believe I was totally factual and objective here but am open to your comments in case you want to add something

Thanks for being there,
Joao
 

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opusensemble

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P.S. Differential diagnosis mentioned above
 

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lgelb

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Joao,

Your cherry-picked snippets from Cliffs Notes-type resources don't change what we know here about ALS, what clinicians know from experience, etc.

A 4% weight loss is not evidence of well, anything. We all experience things that haven't happened before, all the time. That doesn't make them scary.

You have hopelessly confused the set of all possible symptoms (such as stiffness from immobility) with the set of typical onset symptoms (that ipso facto don't include stiffness from immobility, since ALS doesn't start with waking up and not being able to move something). It is like saying there is no sun because you are sitting in darkness. Self-reported "testimonials" are seldom both objective and complete. No one would compare your symptoms with these to diagnose you.

I can only encourage you to get an EMG, primitive as you may consider it, as it's part of the most objective set of diagnostic criteria that exists. Your late-night fatigue/anxiety-infused perceptions of your nerves fibrillating [sic] are not a substitute for that process. If you read the literature, you'd also see that the sensitivity and specificity of that process is really very high.

If you really believe you have ALS, I'd think you would want a formal diagnosis to receive help and benefits; you don't sound very happy in the status quo.

Since you acknowledge a history of depression, this thread suggests a possibly serious relapse whether you have any concomitant conditions or not. Consider the hypothesis that you are in effect talking yourself into immobility and at least test it fairly (off line in the real world).

Best,
Laurie
 
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ShiftKicker

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Opus- You have posted a manifesto length missive arguing for your self diagnosis for ALS. This forum is not here to help people diagnose themselves. It is here to support those who have been diagnosed with ALS or for those who care for a loved one with ALS. As a courtesy to those who are worried about ALS, the folks here sometimes voluntarily provide some guidance and some advice for those who are concerned. The people here have provided you answers and recommendations based on their capabilities and knowledge. If you do not accept this, that is fine- but we are not here to argue. It serves no purpose but to frustrate all involved.

You do not need to convince us of anything, nor prove you have found reference to this or that symptom as a clear indicator you have ALS. The people you need to talk to are the medical professionals who can A) physically examine you and B) provide you a diagnosis or referral to a specialist based on their objective and systematic examination and your medical history. This is not the place that can provide you that service.

Please refer to the https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html post again to review the information there. Please also refer to the final paragraphs that provide some recommendations about what to do when the people here have answered and you wish to continue the debate.

I respectfully ask you take your questions to your doctors. This forum is not a place to debate people who have ALS and try to convince them of something they do not see.
 
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