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Simba

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Hi everyone, I apologize to add another to the ‘Could I have ALS?’ pile. I’ve read the sticky notes here, and after reading many threads here over the past couple weeks, I figured it was time to ask here. I'm a male, and 38 years old.

About 3 weeks ago on the 20th of June I went on my regular weekend bike ride, which is a few hours, and about 15 miles. It had been a stressful week and even on the ride I was unable to push the stress out of my mind, and once I finished the ride and returned home, and then went to bed that night, I had fasciculations all over my body. It was something I’ve never experienced before. All night I laid there, unable to sleep for even a minute, as muscles twitched over every inch of my body. Every couple seconds. No particular spot - every square inch eventually twitched. If I was lucky to look at the right spot, when it twitched, I could see it - a large visible muscle twitch. I was unable to sleep because the twitches would jerk me awake, as well as I worried what what going on with my body. The next morning I worked from home and still had muscle twitches all over. Then again the next night. A bit less, but still all over and now perhaps one every 30 seconds, randomly all over my body. Managed to sleep a bit intermittently. The next 3 days/nights this pattern repeated: some fewer twitches, and a bit more sleep.

I'll note that this has never happened to be before. I've sometimes had the odd random single muscle twitch over the years, but nothing like this. After the bike ride, these twitches were literally constant.

Gradually, about a week later, the twitches became a lot more sporadic, but they are still here, and now they are about 50% in between my calf, thigh, and buttocks on my left leg, 25% on the same areas on my right leg, and 25% all over my body. So chest seems to be common; inside my stomach - I guess a deep muscle in my stomach - is also another place; my back; bicep; and sometimes forearm (either one). Now it is maybe once every 5-10 minutes, as opposed to once every 10 seconds in the very beginning.

In addition, about a week after that bike ride I have been sore all up the back sides of my legs: the calves, the backside of my thighs; and all up my buttocks muscles. This comes and goes, but has been pretty consistent most days. It is just this dull ache that comes and goes; it is still there when I lay down, for example, and is even there sometimes as soon as I wake up in the morning. This is still persisting until today.

Also, there is a shakiness/awkwardness to my standing now; even when standing for a short time, my legs feel shaky and tired and I feel like I want to rest - like I've been standing for hours. But I haven't. When walking or just moving, my legs feel awkward, and sometimes my arms do too. I've smacked the container of orange juice into the fridge wall, or into the side of the counter, or hit the side of my face with my toothbrush when trying to brush my teeth - just awkward things like that, that generally I'd never do before. My limbs - especially my legs - just feel tired and uncoordinated.

Also, sometimes there is this buzzing feeling in my legs; they feel like they vibrating. It's a strange sensation, like perhaps a ton of adrenaline is coursing through my legs and vibrating them at their core. This sensation is more sporadic, but it will still occur once every two days or so. It generally stops once I walk around for a bit.

Finally, I've lost about 10 lbs over the past 2-3 months. Not intentionally; and I haven't upped my exercise - in fact, I generally sit more because of my job - but I used to be about 202lbs for a year, and now I'm at 191lbs. It isn't a ton I know, but it hasn't been intentional. I've measured around my thighs, and my left leg - the one with most of the twitches - is about an inch smaller than my right thigh at parts. You can see it in this photo I attached here.

So I understand that fasciculations by themselves don't say anything. And I also know that a gold standard here - beyond an EMG - is 'failure not feeling'. There aren't things that I cannot do anymore. But before the 'failure' part in every PALS' experience, there must have been some period of pre-failure - some period where they noticed weakness for example, as some muscles compensated for the hidden - at this point - atrophy of other muscles. I'm of course wondering if I am in this phase now. I don't know why my body was bombarded with muscles twitches so suddenly; and why while they have receded, they are still here, and now more so in my legs (at least the majority). I don't know why the back of my legs ache so much so often. And why they seem to feel so fatigued and awkward to move. Obviously - by virtue of me writing here - I'm worried that is an indication of weakness or muscle atrophy in my legs. Add to that the unintended weight loss, and while statistically speaking I am not approaching a place of despair, I am these days navigating through a fog of 'what if' and worry. It is affecting my life. I'm 38; so while I know I'm 'young' in respect to ALS, I'm not 20 either, and I'm at/approaching an age where it isn't as rare as it would have been for me were I 22 years old.

I spoke to a doctor and he seemed very unconcerned with all this, and just told me to return to him if everything hasn't gone away in a month. Well it has been 3 weeks now, and I'm skeptical it will all be back to normal in a week.

So I guess the advice I'm looking for here is: this is worth pursuing, right? While I have no 'smoking gun' - in the case of 'foot drop', or being unable to do things I used to be able to do, or objectively measurable failing strength, or a 'dirty EMG' - I still have a strange enough combination of symptoms that wouldn't make it impossible for this to be ALS. And if it did turn out to be, while looking back on these symptoms, they wouldn't be completely typical, they also wouldn't be totally unprecedented either: fasciculations; aching 'muscles'; potential (albeit unproven) weakness; lost weight/(muscle mass?).

The National Institute of Neurological Disorders and Stroke (Amyotrophic Lateral Sclerosis (ALS) Fact Sheet | National Institute of Neurological Disorders and Stroke) list the early symptoms of ALS as:

"Early symptoms include:
  • Muscle twitches in the arm, leg, shoulder, or tongue
  • Muscle cramps
  • Tight and stiff muscles (spasticity)
  • Muscle weakness affecting an arm, a leg, the neck, or diaphragm
  • Slurred and nasal speech
  • Difficulty chewing or swallowing"

The first 4 either definitely or seemingly apply to me. It therefore makes sense for me to go back to my doctor and see what is going on, no? Could all this together put ALS on the list of illnesses to be considering?

In any case, thank you to everyone here for the time and effort that you put in to listening to folks like me who pop in with questions like this, and thank you to anyone who comments; I just don't have anyone else in my life at the moment that I can ask a question like this. I think I will be going back to that doctor in a week, to see what is going on in any case. It would make sense that I do that, right?
 
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Of course, it's worth seeing a doc and getting labs done to rule out anything systemic, when you have buzziness, fatigue and loss of weight/coordination. It may also be worth videoing your sleep to see if something different is going on, that has consequences after you wake up.

But none of this sounds like ALS, which acute onset of widespread twitching argues strongly against. So while it may not technically be "impossible," it's how to bet.

There is no perceptible "pre-failing" period as you suggest. That is taking you back to feelings that people with ALS don't have.

I would see your primary care doc as he suggested. But there is no reason to think of ALS. Comparing laundry lists of some features that people with ALS develop is not productive. People with brain tumors have headaches, too. But I'll bet that if you had one today, you wouldn't jump to a brain tumor.

Best,
Laurie
 

Simba

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I understand what you are saying. I wrote here because obviously I have a level of worry that the strange symptoms I'm feeling fit closely enough with my limited non-doctoral understanding of ALS, but I am aware of the significant limits to using google to self-diagnose. If everything just lasted a week, I'd have chalked it up to stress, and would have been done with it. But it has lasted longer, and so the novelty of the symptoms plus the length of their duration has admittedly gotten me a bit nervous; I didn't have anyone else to ask, so I wrote here. If things continue for this week, I'll see my doctor again on the weekend and I guess see what he recommends from there. I would be happy to update here, for posterity's sake, and if it could in any way help others. I appreciate your time here reading my admittedly long post (sorry!), and responding to my query Laurie - thank you.
 

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I do think being fully examined by a doctor is the first thing you should. It sounds like you 'spoke to one' who was not concerned.
If you actually present to a doctor you will be far better off. You can then return here and report clinical findings, and test results, instead of your feelings and fears. I don't want to sound like I am discounting them, it is just that I hope you can appreciate that since we cannot see you and examine you, all we can say is that you are reporting lots of vague things that may or may not be anything or nothing.

Get straight to a doctor and start getting this sorted.
 

Simba

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I appreciate the response Affected. When I mentioned I spoke to a doctor I meant I did have an appointment, albeit an online one over Zoom. I'm in Canada and I don't have a family doctor, so it can sometimes be difficult to find a doctor - especially when you don't have one already - that will actually 'listen' to you and know your health history and be more open to listening to you. I look for reviews online before choosing a doctor, and this one I saw seems to be good, but he only has online sessions at the moment. So I think I might need to go present in an actual clinic.

I still am having issues that I didn't have before a month ago. They just seem part of my life now, and I do my best to deal with them until I go present at a doctor. During the week it isn't possible because of work, so now that it is near the weekend, I will look for a doctor at a clinic with a good review and go in. But even this isn't easy: a large number of clinics 'aren't accepting new patients' and another portion are only doing virtual appointments. I've looked throughout the week. Getting an in-person appointment with a decently-reviewed doctor is actually really really difficult. I'm going to do my best though.

In the meantime, I'm still just struggling with trying to figure out what is going on with my body. For example, yesterday morning I woke up earlier than my alarm, feeling like I was vibrating with muscles twitching all over my body. My left leg and left arm felt like it was shaking and trembling, and muscle twitches were firing off all over my body. Today, it was somewhat the same, only most twitches were again in my left calf, and buttocks. About the same wave of conditions came on at 12:00 noon, and then again at 5:30pm. It's a feeling almost like adrenaline or something is coursing through my body, causing it to feel like it is trembling, and then fire off muscles twitches - somewhat all over, though most are still in my left calf, thigh, and butt. Generally after, I'll feel fatigue in my legs - esp left - and sometimes pain up the backside of both legs (or just the left). Yesterday, after standing and walking for no more than an hour, both my legs felt like I just ran a marathon.

I switch back and forth between thinking 'this is super strange and I'm really worried this is ALS' and 'statistically, this must be something else'. I've never had a month or experience like this in my life. I'm looking for clinics online for Saturday as we speak.
 

affected

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I'm sorry it is so hard to get to health care there, I had no idea.
Our Canadian members speak so highly of the health system generally. I hope you can figure that side of things out this weekend.

Let us know the outcome of a full examination and the diagnosis.
You just are not reporting anything like ALS symptoms.
Maybe you didn't read this post before, it really answers your concerns. We truly can't do anything more from a text forum.
 

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Hey Simba-

I'm pretty familiar with the Lower Mainland doctor situation, and you're right- it can be hard to find a regular family doctor. It's possible, but it will take some effort. There are many many walk-in clinics who have doctors who are also taking on new patients, you'll have to call around. 'Til then, speculating about what might be the trouble is an incredibly easy way to increase anxiety. If you're really stuck, join a Coquitlam/Pt Moody subreddit or FB group and ask in there about family doctors.

This forum can only provide the most basic of information. I hope you will read the link Tillie provided you- it answers many questions. After that, we recommend people visit with a doctor to get a physical exam. Only they can tell you if there's a neurological component to your concerns.
 
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Simba

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Thank you both for responding; thought I reply only once I had an update. Thank you Shiftkicker for the advice about doctors; I spent good long period on friday after my workday finished, and found a doctor's office that indeed was still taking in-patients. Before that, I probably spent 2 hours calling every doctor within 10km of me; 85% weren't taking on new patients; and the 15% of the clinics that were, were only doing video/phone appointments. So I found a doctor about 20km from me, and I made it just in time to give my info before they closed. When the receptionist heard how far I came and how I was worried about twitches that hadn't gone away, she went and spoke to the doctor and the latter fit me in as the very last patient of the day. I was very grateful to both; and expressed that. The doctor did a few checks of strength, and then gave a requisition for a blood test for everything that she said she would be looking for. I made an appointment for Tuesday for the blood test during my lunch break, so will go in then. I will hopefully be able to see the doctor again on Friday, for my results and next steps.
 

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It's been a while but it is time to update here. Things aren't looking too good right now. Last that I updated here, I was waiting to see a neurologist up here in Canada. My new GP (have been seeing her since July), put in a referral as 'urgent', and so while I still had to wait awhile to see a neurologist, there was a cancellation, and I got in on August 25th (12 days ago). The neurologist appt lasted perhaps 30 minutes at most. The doctor asked me about what brought me here, and the timeline, and I answered all to the best of my ability. A recap:

June 1: First Pfizer vaccine (may or may not be relevant)
June 23: bodywide muscle twitches start at night during a period of high stress; this lasts for 3 days, fairly consistently
June 26: bodywide muscle twitches gradually recede, and eventually my left leg is receiving about 75% of twitches over the next week, with other twitches elsewhere. At same time, I 'feel' weak in my legs. I 'feel' like my legs don't want to hold me up like they used to.
July 1st: Muscle twitches recede more, but never completely disappear, and left leg still makes up about 75% - calf, inner thigh, outer thigh, and buttocks. Legs still feel like they don't want to hold my weight (I'm 190 lbs).
August 1st: Obviously these dates here are approximates, but around this time I notice that I've lost about 15lbs - from just over 200lbs to about 185lbs - without trying. I'm still seeing my new doctor every 2 weeks, and we've done some blood tests. Around first week of August, after mentioning the weight loss, I get another blood test with many more tests, (cancer, thyroid, HIV, etc. and creatine kinase to see about muscle loss). All come back normal. Even the creatine kinase, is at 60, which is well within normal range.
Middle of August: I walk 5km around a park near my house about 3 times per week. As august progresses, I notice two things about my walks: (a) my legs get tired and 'awkward' earlier and earlier; after walking for 40 mins, my legs (esp left) get tired and I kinda stumble a bit; no tripping, but awkward stumbling; and (b) my legs start to tingle in the feet and calves at the 3km mark and as I continue walking (sometimes I walk 6km) my whole legs start to tingle and feel like 'pins and needles'. I lose a bit of sensation and this makes walking awkward too. These sensations remain for the rest of the walks, and subside about 30 minutes after the walks end.
August 25th: I see the neurologist.

So at the neurologist appointment, I relate this timeline, which I also have written down, in more detail. After this, she does physical tests/checks. Move arms in this direction, that direction, walk on toes, heels, show tongue, follow finger with eyes, and checking my reflexes (I guess for hyperreflexes) and sensations on my legs and around my body, etc. About 15 minutes of these tests. At the end, she says everything is perfect, and that she sees no evidence of any issues and that 'I am healthy'. Okay, so I ask about the feelings of weakness, and the twitching. I'll note, she never checked out the locations where I noted I had the most twitches (my left leg). She didn't look at my thigh, nor my calf, both which are the ones which do still twitch. Nor did she explain my feelings of weakness in my legs. Nor did she check for muscle loss on my legs (in my thigh). She said everything looks perfect. I saw my doctor 2 days later, she said she hadn't gotten the report from my neurologist yet, but that she was really relieved to hear I was fine and healthy; she said she was really worried for me before, but now that the neurologist said I was fine, I was fine.

That was August 25th and 27th. Since then, the left side of my body continues to feel 'strange'. My left leg especially, as well as periodically my left arm (shoulder and forearm, and hand). The twitching has actually increased again, for the first time. especially in my leg. I still get twitches in other places, but especially in my left thigh and calf. Simply being on my feet is now 'awkward'; my left leg feels like it is getting weaker, and it is now affecting my life; I can't stand without resting for even relatively short periods of time like 15 minutes. The twitches seem to constantly pop in - a twitch here, or 10 rapid twitches there, both when on my feet and when sitting. And my body just feels 'itchy'; my left leg is the most itchy, but my other limbs are itchy too. Just this strange persistent itchy sensation.

So I don't understand what is happening to my body. 12 days ago, the neurologist apparently said I was ok. But I feel very very far from ok. My gait has changed; after being on my feet for 5 minutes, my walking and standing and just moving around has become awkward. I don't seem to be tripping, but I am stumbling sometimes, and just don't seem to have the 'standing dexterity' or standing strength I used to just months ago. I'm itchy all the time. My left leg and left arm twitch and spasm more often than they have for over a month and feel weak. My legs tingle and feel like pins and needles when I do a modest 5km walk; and I don't seem to be able to simply move around as I could a few months ago. I'm lucky enough to be working from home these days, but if I had any sort of job that required being on my feet for a bunch of the day, without a question, I would have had to quit. Because I can't do it. I can't be on my feet for long anymore - my left leg starts to give out, and I start to walk awkwardly and stumble.

Is this looking more like ALS now? Why did my neurologist say I am ok, when I feel the furthest thing from ok now? I've been lucky in my life to not have many health scares (before this period in my life), so I don't know what I should be doing next, or if I effectively advocated for myself so far. I've read through some of the forum posts here - how is it seemingly so easy for others to get EMG tests, when the prospect of one apparently wasn't even on my neurologist's mind? My gait has changed; I can't remain on my feet like I used to; I walk awkwardly, get tired, and stumble; the twitching has been increasing - these aren't things that I can ignore.

I'm sorry for the long post, but I don't know what I should be doing next.
 

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Does someone besides you see a difference in your walking/standing? The whole of what you describe continues not to resemble ALS. However, if you have an actual new functional limitation, someone should follow it up. Itching, tingling, loss of sensation, etc. could be anything or nothing but should be monitored.

I would update your GP on the key aspects while understanding that when you overwhelm a clinician with information, it is easier to dismiss the whole of your issues as health anxiety, and, as we have already surmised, that may well be the case. Still, someone should have the full clinical picture so you have informed advice as to where to go from here.

If you are open to the possibility that this is more mental than physical, there is a treatment plan for that, if so. Sleep, stress, exercise, social interaction, nutrition, and hydration can all affect the kinds of feelings you report, and the mind can build its own castles, even to the extent of stumbling and perceived weakness, so as you continue being monitored medically, it is worth considering each in turn.
 
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affected

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I think what stands out most to me is that you reporting twitching and 'feeling' weak.
You need to get an understanding of two important points, these will truly help you.
1. twitching means nothing
2. PALS don't 'feel' weak, they feel normal and are stunned that a part/s of their body simply will not work.

That is a massive difference to what you report and you had a thorough neuro exam.

It doesn't mean nothing is wrong, it means nothing neurological is wrong, so your doctor can now hopefully address this in other ways.
 

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When the neurologist said that you are OK, she was correct. You are neurologically fine and have nothing going on that points to ALS. As others have said, when one has ALS they don't "feel" weak, one of their body parts (such as an inability to stand on your toes or go back on your heels, for example) just does not work and they have no idea why. This is what typically starts the medical search as to what is going on. You do not have this issue as everything you have stated is sensory related, not motor related, like it is with ALS.

I would say to leave ALS behind and keep working with your docs. I believe, however, given the large length of your posts and your disbelief of the neurologist and those on this forum, you may have trouble letting go of the drive to chase after ALS. I hope I am incorrect about this. In any event, I wish you well on working with your GP.

Take good care.
 
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Simba

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Thank you to all three of you for taking the time to read and responding.

lgelb: I live alone. So when I go on 'walks', I'm walking by myself at the park, so no one else is there to see. I see family, but nothing with them has required persistent walking; maybe a dinner here or visit there. No one has said anything so far. The sensations that I feel tend to rotate.

Twitching: on and off all day; 80% in left leg (between thigh, calf, butt); 10% in right leg (same); and 5% randomly elsewhere in body. Much worse after using leg for a long time; tired; fatigued; or stressed (about work or whatever).
Tingling: after sitting for while; sitting on the toilet (not long, but it is a position one is only in for one thing, and even though it isn't long, the position generally causes both legs to start tingling); and after a couple kms of walking.
Itchiness: throughout the day, and seems to flare up when I walk or exercise; primarily on legs, but not only legs
Trembling sensation: If I sleep poorly the night before, the next day I will - without fail - have a trembling sensation in my legs at various points the next day. Usually when sitting at the laptop for work; when up and stretching later; and esp when the next night rolls around.

These are indeed all new, since this all started in June. The worst is when I'm tired, my left leg feels like it is 'coming apart at the seams'; it feels like it is trembling; it is twitching in multiple spots; it is itchy; and at these times it feels weak - obviously I can't say it has clinical weakness at this point, because need a DR to determine that, but it feels - if it makes sense - like 'entropy' - like the leg is simply coming apart. All the sensations hit it at once and I need to rest - or even better, sleep (having a nap or sleeping at night makes it 'reset' and the sensations usually aren't there - or not as strong - when I wake back up).

affected: I can only report what I feel. While I'm not committed to the idea I have ALS, I do strongly believe I have 'some' neuro or muscular or neuro-muscular problem with my body. I am open to other ideas, but when I experience what I described above - esp when most of it seems centred on my left leg - I really find it difficult to believe it isn't anything. I recognize I don't have clinical weakness. But what I am thinking when I think it *might* be ALS, is about the weakness that I do experience and believe very much to be real. And I know that at a certain point, those with ALS have a muscle that just 'does not get the wifi signal',- but *before* that point, is where I am worried I am at. Lou Gehrig was a great baseball player, but in his final seasons of play, his quality of play dropped drastically, and the general understanding was that this was because of the changes to his body because of ALS. If Lou Gehrig's ALS was 'all or nothing', - say, if he had foot drop or his hand couldn't grasp a bat - then he couldn't have played those last two seasons AT ALL. He wouldn't be able to walk the bases, or even hold a baseball bat. But he did play - just poorly, because ALS was slowly shutting down muscle groups in his body. My point being: before ALS shuts down a hand or arm or leg completely, there must be an encroaching weakness, as 3%, then 5%, then 8% etc of the muscle groups lose the signal. That is where I am wondering if I am currently at, and why I feel I can't ignore my weakness.

Bestfriends14: With your point about the weakness, I would say my worry is the same as I put above: perhaps I'm at the point where 10% of my muscle-motor neuron connections have been lost, and so while I can still do stuff, it is all just harder, and I feel 'weak' because the loss of some of my muscles, while my other ones are being forced to compensate.

I'll state that I'm not 'searching for ALS' here, which is why I hadn't posted here for so long. I've been trying to live my life, and thinking if it is it, there is nothing I can do anyways, so just best to carry on; and if it isn't, see if things get better or go away the next day. But this doesn't happen. The next day, I still have all these sensations, and this feeling of weakness on the one side. That's why if you asked me right now, do I truly believe I have ALS, I would say 'I don't know, but I think it is definitely possible'; and if you asked me if I truly believe I have *some* neuro or muscular or neuromuscular *issue* or disease, I would say 'I absolutely do believe this'. *Something* is going on with me that wasn't going on in - say - May of this year. And since I don't have much experience with navigating the healthcare system, nor apparently do very well advocating for myself in a healthcare setting, I wrote here, to see if anyone had advice on what I might have; if it sounds like ALS; and if not, how I can go about figuring out what it is. I feel alone in all this; I don't want to scare my family; I wouldn't bother my friends; I live alone and I'm just trying to figure out what is going on with me.

I'll follow any advice others would have here. Maybe it is MS? Can't ALS and MS seem very similar in early stages? Is there an established way to distinguish between them, or rule one or the other out? I'm sorry, I've just never gone through something like this before, and I'm honestly just lost. Years ago I had stomach pains for a month; saw clinics once or twice per week for the whole month; told it was stress or maybe an ulcer; told don't worry, just take antacids or pills etc. And then one day after about a month, I wake up in the middle of the night in massive pain; go to the ER ; tests show that I need my appendix out *now*, and so the next morning I get an appendectomy at the hospital's behest. So I wasn't crazy or imagining things there; something serious was wrong; and apparently I didn't do a good enough job advocating for myself at my clinic visits, and so was 'brushed away'. I'm just worried I could be going down this path again. Something seems wrong with my body, in the ways I described above; and especially my left leg. Is there any advice on how to pursue this?

(Sorry for the long post; I won't write a long one like this again; I just didn't know how else to address all the points).
 

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Please do not post these huge posts but write this out and discuss with your doctor.
We have no doctors here, not even one. Some of our senior members may seem like doctors but they are not and they are not examining you. Clinical examination is a critical part of correct diagnosis.

Your reply to me shows you have not read the sticky carefully. I never said nothing is wrong, just this is not how ALS starts. Only your doctor can help you work through what is happening. Yes it is not entire limbs that fail, but groups of muscles, but Lou didn't FEEL any different, he just experienced clinical weakness that progressed. You are not describing that, you are describing all these things you 'feel' are about to start happening. Honestly, we keep saying it, and it is truth - PALS do not feel any different, they simply experience failure of muscles that progresses to more and more failures. You are reporting feeling like all these things are happening or about to happen. That just ain't ALS but does not mean nothing is wrong, just that it ain't ALS. Your reply also shows you did not carefully read the link I gave you. Please, take the time to do this slowly and thoroughly, we took the time to write it for you.

Twitching means nothing at all, and tingling, itchiness and trembling are not ALS symptoms.

Here, we are only able to work with ALS, we are here voluntarily on our own time for a disease we know intimately.

You don't display ALS symptoms and only your doctor can assist you further. Please stop coming here and work closely with your doctors.
 
Last edited:

Bestfriends14

Very helpful member
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Joined
May 7, 2017
Messages
1,270
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Again, since you refuse to listen to your neurologist and those here (if you think you know better, why continue to come here posting humongous posts?), than there is nothing anyone can say to you that you will believe.

No one can know if "10% of their motor neurons have been lost", not even a neuromuscular specialist. So, please, in the best interest of your health, stop cruising these forums constantly, print out these posts, and show them to your doc. He can guide you better than anyone here can.

Further, please realise that the very people you are continually seeking advice from are terminally ill or are caring for someone who is. There is a ton on their plates. You do not have this worry, so please respect that. I'm not sure what is going on with you, but the more you post, the further and further your issues point AWAY from ALS. You're very blessed for this.

Take good care and I sincerely wish you the best
 
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