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bcc004004

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Hello all,

Hoping to get some feedback from everyone. If you don't have time to read all this that's okay. But if anyone has the time, I would appreciate it. I am a 32 year old male with a wife and 10 month old beautiful son. Chemical engineer.

In 2015 I made a mistake. I got a prescription for Adderall/vyvanse because I thought it could maybe boost my productivity. In reality, it became abuse. I started off using it normally, but it evolved into taking up to three pills a day sometimes. I would normally run out of the prescription, and go cold turkey, only to have it refilled when the next month began.

In May of 2020, I had an incident where I was laying in bed and my heart rate spiked to 180 (on my watch). I thought I was having a heart attack. It scared me enough that I broke from the cycle of abuse and have not taken the medication since that day. Never will again. But since that day, I haven't felt okay. In fact I have felt like something is terribly wrong with me. I am having an issue every night where right before I fall asleep, right as I'm about to lose consciousness, my heart seems to do something, and it feels like I am suffocating. My heart rate spikes and I have to sit up to make sure everything is okay. When this happens it feels like blood "gets stuck" in my head.

I had a full cardiac workup, ct scan of chest, neck, head, echocardiogram, stress echo, all negative. I have had negative abdominal ultrasound. Brain MRI with small non specific hyperintensity in the periventricular white matter. Two neurologists have told me it is nothing to worry about. I was found to be thiamine deficient which is weird because I don't drink and I have a healthy diet. So I am on a thiamine supplement.

My legs ache at the end of the day and my heels burn. Something feels like it is hitting me in bouts, where I will be okay for two weeks, and then two weeks it feels like I'm dying. I normally walk four miles a day with my wife but last week my legs began to feel weak, and i couldn't stand to be in the heat, it felt like it was shutting my body down. I noticed two weeks ago one of my toes is twitching by itself. About the same time I noticed that it seems harder to do a calve raise on my left foot. I started having fasciculations visible in my calves primarily left calf, then it spread to the right.

I went and got an emg and nerve study done. The emg was clean, but the nerve study showed left ulnar motor nerve decreased conduction velocity at 51 m/s. left sural sensory nerve reduced amplitude (5.7 microvolts). right sural sensory, left median snesory, and the left ulnar sensory showed prolonged distal peak latency. right median sensory nerve showed prolonged distal peak latency and reduced amplitude. All remaining nerves within normal limits. All F wave latencies within norm. emg portion normal.

Several days after the test, the fasciculations broke out all over my body. Pretty much in every place except my tongue. And they are strong. Two days ago, my vision seemed dimmer, ears ringing, and legs felt like they weren't even there, and I went to the ER. They did a full brain and spinal MRI. No demyelinating lesions but did find mild bulge at c5-c6 with degenerative disc disease (mild). Mild stenosis in that location but insignificant. Also find mild disc disease in the lumbar lower back area.

Given the weakness I feel in my left leg, and body wide twitching, I am worried I have ALS and that I simply haven't seen a neuro who recognizes it yet. I have read several messages on here where people with ALS have experienced the growing weakness in calf, twitching, and disc disease.

Questions I have, is it possible that ALS can cause disc disease? My back only started hurting six months ago, came out of no where. Are muscles in my back weakening, and compromising the structure of my spine? Would an emg have picked something up when only my calves were twitching at the time? Can als cause burning heels? Lastly, in the last few months, it seems like every part of my body "falls asleep" more easily. My pinky and ring finger, or weird portions of my legs like my knees will fall asleep. Can ALS indirectly effect sensory? Can stimulant abuse trigger ALS?

The thought that I maybe have this disease, and acquired it from my own bad decisions and mistakes, haunts me. The thought that maybe I did this to myself, and to my parents, and wife and son. Scares me to death. I can't function right now. Please someone help.
 
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ShiftKicker

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Hello-

It sounds like it was looking for twitching online that likely brought you here. Please have a read here and look through it carefully to understand why ALS is not in the picture. Your questions are answered in the linked post, so make sure to go over it to spare the folk here repeating things already covered many times.

You report so many other issues that are completely unrelated to ALS, so you will have to keep working with your doctors to tease out the cause. A belief your neurologist is just missing something or not experienced enough, despite all the tests (including an EMG) pointing away from ALS speaks to your focus on, and anxiety about ALS specifically and could be hindering arriving at an actual diagnosis of some sort.

Hopefully you are also seeking some support while you search for answers, as it is clear you have a great deal of regret and guilt over past choices. You deserve some resolution and you may find talking through things with someone qualified will help your stress levels as you work with your physicians.
 

affected

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Short answer is no to everything.
ALS is a disease that starts in the brain and stops signals going to the muscles, so they stop working and atrophy. You don't feel anything, you just lose everything.
Working with your doctors and asking them what they think is far more productive for you as they are examining you directly.
 

bcc004004

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Thank you for both of your replies. I do have a great deal of regret over past actions with that medication. I am happy to say I have been clean from it for over a year now. Nevertheless, I continue to be worried about the changes that have been happening to my body since being on the medication. Since I originally posted, fasciculations have spread to arms, face, stomach, butt, eyelid. I have also begun to have difficulty swallowing all of the phlegm down my throat. My soft palate seems more exposed, now when I drink pepsi, the whole back part of my throat burns and it never has before. Every joint in my body is popping. I rolled over last night and heard 10-20 pops at various places in my body. The scariest symptom of all for me is my increasing weakness below my left calf. It is significantly harder for me to do a calf raise on my left calf. I do think I am over analyzing my own body. But it is hard not to when I feel so ill the last several months. I started feeling ill the moment I got off the medication which was roughly 12 months ago. But the weakness and twitches started in the last month. I got the clean emg right away but when i had that done there were only twitches in my calfs. I worry i did the emg too early. I am grateful that the both of you responded, it is nice to talk to someone about my thoughts. I appreciate your time. I still battle fear everyday that I have als, simply because of the obvious weakness in my calf combined with full body twitches, and swallowing issues that popped up at pretty much the same time. If you guys are still out there and get this far, thanks for reading this.
 

Clearwater AL

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Get Real
Regardless to your post above... re-read the two replies above yours, Shiftkicker and Affected.

Once again...

Thousands of Americans have falsely convinced themselves they have a
serious disease, after turning to 'Dr Google' – according to new research.
Instead of alleviating concerns, 74 percent of those who have self-diagnosed
online searching for their symptoms made them worry MORE about their health.

That is due to the answers given by Dr Google, of internet medical advice,
was found by researchers to be misleading without proper evaluation by a
a qualified physician.

Sixty-five percent of respondents who used the internet to self-diagnose
themselves the results show typing your symptoms into the search bar might
do more harm than good.

PS. After some have been given qualified answers, even had their Thread
closed (Do not start another) spend days, sometimes everyday, still continue
reading old Threads even going back to 2008. Some that had 3 clean EMGs.
If they do come back... the replies from very ALS knowledgeable members
most likely will be the same.

Not saying this is you... but.
 
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lgelb

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I see no reason to believe the EMG was too early, or that you have ALS. I'm glad you got off the stimulant and some of the issues you mention, like less tolerance for Pepsi, are easily a consequence of just getting older and perhaps a more refined palate...Whatever you think you have read here or elsewhere, you have not described ALS.

Best,
Laurie
 

affected

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We explain really clearly here why the EMG was not done too early. Please return to your doctor for help.
 

bcc004004

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I appreciate everyone's responses and information. I would like to say that I by no means jumped straight to thinking I have ALS. I have been battling symptoms/issues since May of 2020. And since then have seen over a dozen doctors in different fields. I've had a full cardiac workup, multiple spinal and brain MRI's, auto-immune panels, all negative. Except for the mild degenerative disc disease. My twitching continues, accompanied with generalized weakness all throughout my body, the greatest area of weakness being my left calf. Every joint in my body pops, my vision is blurry, constant tinnitus, and it has become harder to do pretty much anything, including to swallow. When I drink liquids my throat muscles feel tired and even my throat clicks now. If anyone has any suggestions on what to do, or which direction to pursue, I'm all ears. I by no means want to have ALS, but considering everything else has seemingly been ruled, out I don't know where else to look. The twitching seems anything but benign, considering all of the other symptoms that popped up with it (swallowing issues, popping, generalized weakness and fatigue). When the twitching started I also basically stopped pooping, and when I do it is tiny little pellets. It is like I am having no colonic movement anymore. Not to mention the extremely vivid dreams that I've had every night for three weeks. It's the weirdest thing. I guess I will just have to wait a while and get another full body emg. Please all, do not think I am trying to discount anyone's input. Again, I just don't know where else to look. If I ever get a diagnosis for my issue, I'll be sure to share it with the group if anyone is curious. Thanks for the continued input.
 

Bestfriends14

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I'm sorry you are going through what you are going through. However, I have absolutely no idea what your symptoms could mean. With your description of popping, generalized weakness, tinnitus, blurry vision, and toilet issues, it may be something systemic. What that is I have no idea. ALS is a completely different disease of the motor neurons, and not the sensory neurons, as your symptoms are related to.

In any case, you have already been told why this does not sound like ALS. I'm sorry you don't believe the folks here or the doctors that have told you this. Honestly, though, you should be relieved that this is the case. I'm sure it's frustrating, as you are not getting any resolution to your issues, but it's not ALS and there's not much more the folks here can tell you.

Do keep working with your docs. Best of luck to you and take good care.
 

affected

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Hey bcc, thanks for the update.
In the link I gave you last time there is a really long list of things that people are often diagnosed when they really thought they had ALS. Please understand, this forum is for people with ALS and it consumes us. That post is really detailed so that we can give people like you the kind of detailed information you deserve and need. We just can't sit and go over each case, like yours, that are nothing like ALS.
What I will say clearly is that PALS find that they feel completely normal, they are totally surprised that something starts to fail to work.
They don't report all the stuff you are feeling. So you are convinced that because you feel all this scary stuff all over many parts of your body (and I am not discounting what you feel), that it must be terrible and terminal. We are telling you that ALS don't work that way.

That's all we can say. You have doctors and they are the only ones that are going to solve this with you and find the correct diagnosis. Please read that link again, and then let this go as it asks you not to keep coming back with arguments or adding more to your story when senior members say it doesn't match what we know. We are not saying nothing is going on, we are simply saying, work with your doctors. Do come back when you have a diagnosis and let us know as it helps others that worry about these all over feelings and issues.
 
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