Lasx, my experience with ALS anxiety for 2 years

Status
Not open for further replies.

donthavealslasx

New member
Joined
Oct 6, 2022
Messages
1
Reason
Other
Diagnosis
00/0000
Country
BG
Hey all,

Thank you for letting me post this, I came back here with the sole intention of making a post which will, hopefully, help others which are going through the same thing I went through 3 years ago and, potentially, stop them from making the same mistakes as me. My old account name is LASX, you can look up my posts.

Now let me preface this that I do not have ALS, my symptoms started 3 years ago and since then have disappeared, peaking a year after the first symptom. This is going to be a very long write up, sharing my experience with severe ( And I am not just flinging this word around casually) ALS anxiety. Now, let us begin:

October 2nd 2019, a very unhealthy lifestyle was about to finally reach a boiling point, I had no idea just how bad it would be though. As a web developer for a busy company it wasn't rare for me to sit on the PC 12+ hours a day in questionable positions, the signs were there since years, pains and aches, didn't pay attention to them, until I started twitching across my legs and my right arm. One day I got off the PC and my biceps was thumping in a visible twitch which took hours to go away the first time. One thing let to another, that lead to research twitching, that lead to ALS - although it didn't stop there.

Two doctor (neuro) visits in, I was assured it's most likely benign twitching, but obviously why would I believe that? The doctors are hacks, or so I thought. So I went to two more, same result. During this period the anxiety was slowly, but surely growing and I was getting more and more nervous, becoming very attentive of all bodily sensations. Heaviness in the legs and the right arm appeared, but the worst didn't happen until two months later, that really spiraled out of control.

I got severe swallowing issues, heaviness in the tongue and what I perceived as bulbar issues. Unlike many non-specific symptoms here, though, I had actual swallowing issues and nasal regurgitation which, naturally, aligned with what I had read about ALS. After eating food would just hang over my soft palate after getting stuck high up in my throat. Eating became a nightmare, so I stopped eating more or less. All the while the anxiety grew by the way, with people around me slowly growing insane (but more on that later). EMGs started raining, one after another - I believe I was at number 15 one year in. Different hospitals, different neuro muscular doctors. 3 neuromusuclar neuros, 10+ regular neuros, one ALS specialist (the best in my country). Thousands, thousands of dollars wasted. All saying the same thing, but the symptoms just weren't stopping, more appeared.

Swallowing issues worsened, I was afraid to eat or talk, it felt unnatural and strained, couldn't really do it. Constant feeling of mucus in the throat and unable to swallow it. Weakness in both legs, frequently cramps in both legs. Then, one night I was in the shower bathing, and felt that my right triceps had a giant grove hole akin to atrophy. Then I felt the same on my left leg - I measured, left leg was 2.5 cm smaller than the right one. Which is above the regular norm of assymetry, or so I read. I started developing breathing issues, couldn't walk far without winding up, couldn't lay on my back because I was getting winded up (OR SO IT FELT). All of this was accompanied by possibly the worst, and I am not exagerating when I say this, anxiety you can imagine to the point of live became hell. My left arm went super tight together with the shoulder, clothes felt weird on it as if that shoulder was smaller due to atrophy (which later was explained).

Now, my EMGs. I had a total of... I don't know, over 10, in the span fo two years. Now, what if I tell you that my EMGs were dirty as well? I had dennervation and reinervation on several of these EMGs, exactly in the problematic areas. And yet not even a single neuro decided to call this ALS, they all called it spinal issues. Obviously that was a load of bullshit imo back then, so it just added to my stress. So, dirty EMG =/= ALS, even with a ton of symptoms in exactly these areas. The big picture of the EMG is more important.

Every single heavy symptom, all which pointed towards ALS regardless of neurologists saying no. Sounds pretty dreadful, right? Well, yes, but actually no. Snap back to reality:

A year and a half after this started, it was revealed that the bulbar issues are due to a severely deviated septum and crevices in the tonsils due to prolong inflamation from the deviated septum, making bits of food stick to them during swallowing (and to the palate) and then be absorbed upwards and under said palate towards the nose.

Twitching was due to inactivity / bad posture. So were cramps, so was weakness. The atrophy was not an atrophy, I picked up bodybuilding, it went away, I am stronger and larger than ever now. Breathing issues disappeared, talking issues vanished with time and calming. Keep in mind that no amount of anti-anxiety medication helped in any way during this period.

Now, let me tell you the reality of the situation from someone who has 0 reason to dismiss you, as he went through all of this himself.

I was 25 when all this started. We know the likelihood of young onset ALS, but of course it's never 100%, right? Looking up on the net you can see people in their twenties with it. But let's look at things logically here for a moment.

Sure, someone under 30 can have it, but the probability of having it with:

1) Clean EMG. 2) Clean Neuro exam 3) under 30 4) with no objective failure brings it down to, what? 0.05%? I assure you it's "possible" for a dragon to swoop down from the sky and incinerate you as well, why would it not be? Dragons could exist somewhere, it's not 100% that they don't even if there's no proof of their existence. Get it? Things pile up, minuses pile up. And If you have many facts piling up and pointing the other way, it most likely isn't this. By all means, I encourage you to consult with two doctors, three even if you want to, make sure they're neuromuscular if that will aleviate your worries somewhat (didn't for me), but stop there and then. Do NOT let this spiral out of control like I did. A few things I learned:

1) Swallowing issues -> ALS related swallowing problems start with water more often than not and thin liquids, if the water is not coming out of your nose (literally, not just "I feel it"), or if it's not choking you, take it easy. There are a thousand reasons to have food / dry food swallowing problems, mucus, throat, sinus issues top of all. And GERD btw, had that too.

1.1 : Your mouth feeling heavy, uncoordinated, numb, weird, needing effort to speak, stuttering over words or randomly mispronouncing them doesn't mean you have Bulbar ALS if it's not consistent and notable by your family. I was having several issues pronouncing many things at some point.

2) Atrophy looks very specific, it's not a hole in the muscle, a grove, or crevice or whatever. It's a distinct shrinking of the muscle along it's entire length which decreases it's size. I have a giant grove in my right triceps which doesn't exist on the left side. My left thigh is nearly 3cm smaller than the right thigh. None of this is atrophy.

3) Twitching is nonspecific, it can be caused from quite frankly just about everything under the sun. Pathological twitching will be associated with weakness and atrophy. Even if it "starts off" as twitching, it will be very specific, constant, and visible 24/7 (worms under the skin), not coming and going.

4) Dirty EMG / dirty neuro exam don't necessarily mean ALS. I had several dirty EMGs for other reasons. I also had hyperreflexia (VERY brisk reflexes) + some clonus, not ALS, but SEVERE anxiety.

5) Many regular issues can pile up and come as one to mimick ALS, don't assume that it's ALS just because it's not "one" other disorder. Look into your overall health first, then go from there.

6) Feeling weak / heavy doesn't equal being weak. At some point I could barely keep my arms up for a prolonged period of time (muscle endurance), but still had great pushing force in them (not weakness).

7) You can't have symptons onset all over the body. It starts from one place and spreads, either from the legs upwards or from the bulbar / arms down. You can't have bulbar symptoms, and leg symptoms, and arm symptoms all at the same time at onset.

8) Cramping is nonspecific, I had terrible cramps when laying in bed (nocturnal) at night. That's an ALS symptom, right? Well, yes, but also a symptom of a thousand other things.

9) Things such as "feeling" week, heavy, having all manner of weird sensations which have no explanation, but also do not burden you in any way are most likely nothing. The ALS specialist called it "just sensations", as if they have no meaning whatsoever.

10) And, finally. Think logically, or at least try to. If you have many things speaking against ALS at the same time (your age, your EMGs, your symptoms onset and location), it's most likely not ALS. Sure, you can hit the 1% and have ALS if just ONE of those things speak against it, but if all odds are stacked up against you having ALS, you need to employ logical thinking.

11) Do yourself a favor and do not research medical papers. The very specific cases in online medical papers which might corelate to your symptoms onset are medical papers for a reason, because they are extremely rare and SPECIFICALLY RECORDED cases of which you DO NOT KNOW THE ENTIRE BACKGROUND. Do not jump into assumptions. The big picture matters. Get off the internet and get some fresh air.

I am now married, and have a beautiful baby daughter, and never want to go back to this low in my life, it was a truly horrible experience. However, while WE can walk away from this and proceed with our lives, actually sick with ALS people cannot escape it or forget it, and that's something you should remember more than anything else. Take your wallet and donate, I donated monthly to the ALS association: . Donate here, or donate to this forum, or preferably both. Give as much money as possible, because there is no fate more unfair and unjust than this. And next time you think your ALS "symptoms" are bad and 100% sure, keep in mind that whatever you're experiencing I had ten times stronger and worse, and I can swear to you that I am not exagerating. I lack the words to describe just how bad things were for me and all those around me.

Visit a neuro, two, three, four if need be (competent ones), have an EMG if you really need to, two even, but do your best to stop there and then. It's often impossible, I know, but do not do the same idiotic mistake as me. I cannot describe just how much money I wasted around all of this. Rather than wasting this money, donate it to ALS associations so you can actually do your part and eradicate this vile disease.

Thanks,
 
Last edited by a moderator:

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,864
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Thank you for returning to tell your story. I am sorry you went through all that but so glad you have recovered and are leading a full and happy life.

it is generous of you to donate. You will note your link was removed as fundraising links are not permitted here. Donating anywhere that isn’t an outright scam helps the cause and we appreciate it very much. Thank you. If you want something closer to home consider ENCALS. In the US there are probably more efficient organizations like IAMALS, ALSONE, Les Turner and the Healey ALSCenter. I don’t mean to be ungrateful and the money you have sent has certainly helped

again thank you for sharing and wishing you a long and happy life
 
Status
Not open for further replies.
Top