Mentally Destroyed - Seeking input, please:

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Worr1esome

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Hello all. First let me add that I am extremely grateful for a DIHALS sub forum, on a forum like this, for PALS, CALS, who are dealing (or have dealt) with this terrible f***ing disease. Let me also add that I am absolutely thankful for anyone and everyone, especially PALS/CALS, who contribute a response to this. I have been lurking on this website every few days, since July, nearly 6-months. I was doing my best to avoid posting here, but I just have nowhere else to turn to.

With that being said, let me delve in, I apologize if it is a lot of information, I just want to pack-in as much detail as possible so that I do not constantly come back, asking questions. This will be long, so please .. please stay and read, I would be ever so grateful <3

Basic information: 24 as of September, white male, weighing 250 lbs., 5'10", located in Dallas, Texas. No (at least known) family history of ALS/MND. I am no longer employed as of October, as my seasonal summer-fall job ended. I graduate next month with a Bachelor's degree.

Timeline:

As of this writing, symptoms began 122-days-ago, July 11th, of 2022 - I started having like—constant twitching in my middle-right thigh with some breaks in between. Then it became infrequent, and moved throughout my body to different parts, at rest (at least that I noticed). Also have had butt-twitching, calves, ribs, chest—pretty much all over my body, both small and big.

(Full disclosure: I have diagnosed GAD, health anxiety, OCD, ADHD, and a mild mood disorder. I enlisted in the USMC, shipped to boot camp, day one I mentally broke down, as it was obviously not for me, so I was sent to the separation platoon, and trained really only for a day or two, spent 28 days in separation before being given an ELS and sent home, I have since enrolled in university, and been quite successful with maintaining a decent GPA, and 'will be graduating with a B.S. & an A.A.. I also had a very mild ALS/MND scare last summer at this same job, same timeframe, but it only lasted a day or two, as I had experienced hand-twitching when typing. I have NOT had an NCS or an EMG, my NP/GP has refused to refer me to one, I also have not had any clinical exams at all. I also read the stickies provided, and I know the odds are extraordinarily low, but I just don't know anymore ... I no longer have a therapist for financial reasons, and I cannot afford an NCS/EMG out-of-pocket, so I cannot even get one, especially without a referral, as insurance will not cover. My diet also is not the best, I eat once, maybe twice, a day, and not a healthy meal usually, I sleep ok, but it could be better. I also video game a lot, and have gotten more into my PC/console gaming with a controller since this began, as I have been in quite depressive mood swings that I do not want to do anything due to these fears and symptoms. I do not smoke, but do occasionally drink. I definitely drink more soda than water, and am slowly changing that. I am also fully vaccinated 3x, Moderna, last vaccine was 5-months before these symptoms began. Let me also add; from October 2021 - February 2022, I had a job where I was working closely(!) with the public ... and I was extremely sick almost the entire time. I would get a sickness, it would leave, then I'd get another one a week thereafter, it would leave, and it stopped after I quit this job. It included diarrhea, mild fevers, headaches, pain, sore throats, all of it. Since 2020, I have had numerous jobs with the public, and this is the only one that caused me to get this sick. I tested only 3 - 4x for COVID, never tested positive. I never got tested while at the job where I was sick constantly. I also used to be a personal trainer from 2017 - 2019, and worked out heavily in middle school, high school, and fell-off after graduation, got lazy and preoccupied, I still have some muscular definition in my chest and arms, but no where near what it used to be. I have tried my absolute best to stay away from ALS videos on YouTube, ALS forums on here, reddit, etc .. and have been modestly successful compared to some other people. I began working out a little bit again, and have gotten stronger, doing body-weight exercises at home, 1-2x a week I do 60 push-ups and 60-squats, yesterday I upped the squats to 80, push-ups will be 80, tonight, I did this for my mental health, because, according to my research, if this were ALS, I would not be getting stronger(?) Also, on December 7th, 2020, I had a motorcycle accident that caused me to fly over my handle bars, land on my forearms, and it caused a non-radial hairline fracture that healed on its own, in my right elbow. I had severe pain for at least a good 3 - 4 months, doing stuff, it went away, and the elbow healed, this was in my right elbow, not left. I also had a bad case of Mono (from EBV) in 2019, though I am not really worried about MS, as my symptoms do not align with it).

July (month 1):

First section of twitching was my inner-right thigh, that was literally constant while at my seasonal job (I essentially was a pool monitor, but nobody ever came, so I sat inside the office on my laptop constantly, just watching TV, YouTube, etc ... ), I googled it, and then all-hell broke loose. Thigh twitch went away after three-days, and it migrated, in a similar frequency of occurrence, to that of my left deltoid right where my left arm and left shoulder-blade connect,, this occurred after I slept in a position the night prior, where my arm was slouched up at an angle above my head compressing that area(?), the twitching stopped, there;

I ended up making a doctor's appointment at my family care clinic, but it was not a GP/MD, it was a NP/Nurse Practitioner, I told her my fears, mild cramp/hand pain that has been coming and going randomly, and she told me it's likely some type of carpal tunnel. She did a blood, autoimmune, and urine sample (for STDs), came back two-days-later, they called me and told me it was something they needed to discuss, and the response was a complete curve-ball: I had tested (+) for chlamydia, which I did not even know I had. I also turned out to have low vitamin D, which can cause some of these symptoms(?). I end up getting prescribed Lexapro for my anxiety, and some antibiotic for my (+) Chlamydia test, as well as some vit. D supplement/pills. No clinical tests done. Let me also add, that, I know who gave me chlamydia, and this situation has since been dealt with, symptoms occur 2-3-weeks prior to onset, and my twitching in my inner-right thigh-area began in that timeframe, three-weeks post-infection, from when I contracted the disease. The odd thing though, is, I never had any traditional chlamydia symptoms, at least that I noticed, no groin areas or anything. I developed pain in both hands, right at this time, I was typing up a long application for citizenship via ancestry for Portugal (I am a Sephardic Jew), and was rushing to 'get it in', in time. I had to stop typing for a bit, because it got so bad. Minus the previously mentioned, my autoimmune and regular blood panel were unremarkable, except for some cholesterol, triglycerides, etc. I also experienced dual-thigh stiffness, muscle stiffness, etc.. that have lasted briefly and occurred on occasion;

August (month 2):

Twitching was around the body at random times, sometimes frequent, other times, not so much, throughout the day. By this point, I had finished my antibiotic cycle for chlamydia, as well as taking Lexapro as prescribed, and vit. D in the same, twitching occurred literally everywhere, but for August, it was in my face frequently, side of my head, upper-lip, and in my right-eye, in the eye, I could even provoke it by closing hard and opening. I've twitched essentially everywhere except for my tongue and my groin itself. I still have the twitching, but not like they were prior. I had a weird 'pre-cramp' or, as one would say, minor (perceived(!), as I am not a doctor and cannot make that statement without bias) spasticity in my left foot, that felt as if it was pulling a muscle and holding it there, on the inner-side of my left foot. It has since dissipated, in the middle of August, I also had weird vibration in one of my legs, I do not recall which, but it was constantly vibration, as if it was a massage chair, it was very strange, it lasted a few minutes, a few times one day, and I have not noticed it come back.

September (month 3):

Twitching still around the body at random times, significantly less frequent compared to July. I still get random, very mild shooting pains in my feet, and hands, at random times. Throughout this ordeal, I have been mentally drained, and almost mentally dead. I have been so upset by all of this, I had nearly dropped out of school. But in September, I tried my best to push on, especially for the start of school and my 24th birthday. I also was a country swing dancer for 3-years, it was a big hobby of mine, that kinda died with the pandemic. I've gone on occasion, but a bit more as of lately. In late-late September, I went country dancing, and did a move where I picked up a girl, with her legs around my waist, and me letting her lean back to touch the ground, and spinning our bodies in space, I did that a few times throughout that Wednesday night, and my forearms the next day were quite sore, mostly in my left one, where I experienced more cramping earlier at the onset of these weird symptoms. This was particularly in my left forearm near my wrist, it hurt to bend in the flexion position for the next few days, and on some of the days it got better, others of the days, worse, when I was gaming/stretching enough/not enough/too much. I went dancing the following day (Thursday), and it got slightly worse, so I laid off of the floor for a bit pain eventually went away with some rest and stretching ..

October (month 4):

I decided to go back dancing, and did some pick-up rotational swings, but not as much, and had some minor pain in both arms, more left than right, again, but it was much more mild comparatively. It got better after the same acts were taken as the previous. The odd thing is though, when I straighten my left-arm out, and rotate/move my wrist around, I hear a muscle popping in my forearm, like something is rubbing/moving, not so much, if at all really, in my right arm. By the end of October, a few days ago, I had another two-appointments for a blood draw and results with the same office, but a different NP, still no doctor. She seemed a bit more receptive and attentive. The first NP told me that, at my age, unless I had family history, I really have nothing to worry about, and that my symptoms were likely caused by low vit D. as well as my chlamydia infection. This second one told me my chlamydia infection was gone, and that my symptoms in my hands from dancing likely seemed to be a muscle strain, ligament strain, etc .. something along those lines. I suppose it makes sense in my left hand because of the muscle popping I am hearing in my forearm, as the pain subsided with taking a break from dancing, video gaming (for a day or so), and adjusting my sleeping position, as I tend to sleep on my left side with my left hand underneath my pillow. The left-hand, on the days it would hurt, at the joint/muscle to the wrist, would

November (month 5/currently):

Officially 5 months tomorrow. Twitching mostly occurs now after working out, in my thighs mostly, sometimes middle back, and occasionally all over, but probably less than 10x a day, if I can recall or even if I notice it. I ran out of Lexapro briefly and fell deep-down the rabbit hole again, falling into mild depression. I also began to have weird arm pains again on both sides, and occasionally in my left shoulder-blade. I assume this is because I was adjusting to a new chair and desk I put in my room, to play games on my PC, and have been leaning my forearms on the desk, leaning on them, to play. I adjusted my seating position and it seems to have stopped? I don't know anymore. I also arm-wrestled a friend yesterday with both hands, not thinking I was as weak as I was compared to how I used to be years ago, and I lost each time, which, I could care less about, but in both arms, I immediately got some mild pain in the outer parts of the forearm, this time in the right one more than the left, it has since gone away, mostly, now it's just mildly sorta, this was mostly in the joint with the wrist, where I rematched my friend to arm-wrestle. It has gotten better it seems, comparatively, as previously mentioned.


Mental synopsis:

I have fallen into a mild depression now, even though I am back on Lexapro, I am not even motivated to get a job anymore. I have not even tried looking and have spent my days, since early October (when my seasonal, slouchy outside, inside, then outside again) job ended, gaming and sitting in my room, occasionally going to drink, and doing school work. Playing on my PC. Watching Hulu, Netflix, or YouTube. I do not have, and cannot afford, to see a therapist for this. My NP will not refer me to a Neurologist, and quite frankly, I have no idea as to if it is worth it to keep asking, as it appears that would lead to my anxiety skyrocketing and fishing for answers where I should not be casting a pole(?), if it turns out that everything is normal. My OCD is absolutely horrible. I have had Pure-OCD/mental OCD over various things throughout my life, and occasional physical OCD. I was Dx by two separate therapists with it. My anxiety is also f***ing dreadful. I absolutely fear that this is ALS/MND, and I am not feeling like doing anything anymore.


Physical synopsis:

Throughout this ordeal, I had experienced twitching, pains, aches, muscle vibrations, burning sensations, fatigue, perceived weakness (not clinical), muscle tightness, tingling, occasional muscle jerks, as well as the occasional wake-up right when falling asleep, though this was more an occurrence at the beginning of my anxiety ordeal over this, in July - August. The aforementioned symptoms have come and gone throughout this ordeal, mostly they have chilled out. I have not had any Charlie Horses or anything like that. Just the 'pre-cramps' BFS'ers describe. Have not had those in two-months, though.

I am well-aware that one cannot test their own reflexes, so I do not even bother outside of the Hoffman sign, which I tested myself for, never had any issues. I have done strength tests, walking on toes, heels, jump on heels, can tap my fingers, and have some decent strength in my hands that I suppose, if a Neuro analyzed, would be a 5/5 on the strength test. I have no idea though ... I can still do everything I can beforehand it seems, I can eat, write, workout, game. I am not worried about Bulbar, as I know that is extremely rare to begin with, in an extremely rare disease, for anyone under 30. No speech issues or anything. I occasionally get thenar pain around my thumbs when gaming, which I suppose could be attributed to repetitive use injury(?)


Questions:


1.) (Do) I have an (irrational(?)) fear of ALS/MMD, ever since going down the Google rabbit hole after innocently searching for the cause of my fasciculations. What are the chances that this is ALS/MND? Would I have more symptoms by now, nearly 6mo. in? Statistics and insight would help with my reassurance, please.

2.) I have gone, since these symptoms begun, to having a fear of: MS - ALS/MND - Parkinson’s - Brian cancer - A malignant tumour - back to ALS/MND. What are the chances it is any of those?

3.) I read on BFS (edited) from a Romanian poster that the best ALS/MND Neuro. In their country that ALS/MND does not affect in the eyes, so thus the twitching points to being benign, is this also true? Does this mean my chance of ALS/MND has dropped dramatically because of the fact that my right-eye had begun twitching a week or two ago?

4.) How do I calm myself down when my NP won’t refer me to a neuro., and I cannot afford one OOP, as well as a doctor?

5.) I fear that my issues I have been experiencing in my hands these past few weeks from dancing/gaming could be a form of weakness and atrophy beginning, and I am not realizing it, as other muscles could be compensating for the weakening of the ones that are hurting when I pick someone up dancing, and when I lie my wrists down on my desk, gaming, I use an Xbox controller for my PC.

6.) Could my (health) anxiety/OCD be making these symptoms worse? I’ve been really analytical all over my body … some days I get anxious and going down the rabbit hole, other days I think it’s absurd. I just dunno what to do :/ ..

7.) Is it rare for my symptoms to occur without clinical weakness for it to be ALS/MND? I can still jump, eat, run, walk, etc ... just at a slower pace for running, considering my weight (Lol).

8.) Could this be the beginning signs? I feel as if this might be a slow moving form, if it is such :( ... (?)

9.) My first NP told me that she thinks my chlamydia as well as my vit D. (mildly below normal) as well as, at the time, working in a dark, cold office, not being outside in the sun, could be causing these symptoms, and that bacterial infections can easily mess with one's body. But the thing is; I had none of the traditional symptoms that accompany it, regarding my groin-area, except twitching in the thigh (the only thing I could find regarding researching it is myelo-radiculopathy after a chlamydia infection), I did discuss this with a friend who had chlamydia, and her symptoms had occasional sharp pains and body wide twitching, and then she took it and it mostly stopped she said. How the heck could the clap be causing so many of these issues though ... (?)

10.) My second NP told me my hand issues were likely a muscle strain/overuse injury/ligament tear or soreness. How could this be causing this pain? Could it have branched from an overuse injury comorbid with my potential chlamydia-related issues, from typing so much, and got better, then worse again because of dancing, then better, then worse, because of gaming, then better, again(?) I have absolutely no concrete understanding of this. I am apart of the BFS subreddit, but it has been plagued with people trolling, and I don't know. Someone else I met there told me my symptoms could very well have just been transient issues since they stopped mostly. In ALS/MND, do the twitches every stop, once they begin?

11.) How long should I give myself, in terms of time, to be able to reasonably drop this ALS/MND fear/dogma, as it has nearly been 6-months. No clinical weakness.


I have no where else to turn or confide, I am in a dark space mentally, like---really dark. I would appreciate any input, and, to any reader/responder, especially PALS/CALS, thank you so much again, truthfully.

EDIT: Romanian poster was from BFS, I forgot to specify, sorry.

Please, any input … I am really not well mentally at the moment.

Thank you all again.
 

Bestfriends14

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You don't have ALS, you have severe, severe anxiety and it's manifested in a somatoform disorder. There are free crisis hot lines that you can call to get some help.

To be honest, your post was so long that I only got through a third of it. In any case, what you described is not ALS onset. I strongly urge you to reconsider coming to a forum for terminally people, posting superfluously long posts, and please reach out to a distress line for help instead. They do exist and they will help.

For the folks here, we're tapped out emotionally to handhold individuals with severe anxiety and for that I apologise. There is so much on the plates of individuals living with ALS, and for those walking alongside those with ALS. Please consider this the next time you seek to soothe your anxiety via a website for terminal illnesses.

I do wish you well and hope you can find the help you need.

Take good care
 

affected

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answers
1. the bit I can see of what your doctor says about all this indicates yes
2. pretty low
3. twitching means nothing anyway
4. that is up to you - get help
5. not a question - see your doctor
6. yes
7. not rare, it just doesn't happen that way, and you know this if you have been reading here since July
8. repeat question - your doctor is not concerned about ALS
9. we are not doctors here, we will only discuss ALS, ask your doctor
10. twitching means nothing without the clinical failure you do not have
11. since your doctors seem to be saying you do not have ALS, drop it now just like you dropped all the other terminal diseases in Q2

We are not the place to come for help I'm sorry.
 

Worr1esome

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Hello, thank you for responding. Regarding #7, I’m slightly confused, if you don’t mind just clarifying your answer. Is it rare? Or are you saying it’s not? Sorry, just because as it reads. It appears you’re saying it is not rare but doesn’t occur? Sorry I just would appreciate clarification.
 

ShiftKicker

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Hi,

I really recommend you find someone you can talk to about things- an ALS forum is a very unhealthy place for a person with health fears to be. I don't believe you belong here- your health anxiety and perseveration led you here, but it's simply the wrong place for you. You've had your questions answered by multiple medical professionals, plus you've been active in at least one BFS group, so I'm pretty sure you know you don't have ALS.

I would warn you against using this forum to scratch the reassurance itch- block it from your browser so you aren't tempted to keep engaging here. It's clear from your post that you go over and over every single sensation or physical thing, so it's doubtful you'll be able to feel reassured for long before needing to return to ask again. The multiple medical professionals you've visited have not helped you leave MND behind, so it's very unlikely a bunch of strangers on the internet can reduce your fears.

Please keep working with your doctors to tease out what physical issues you can address and work on your health anxiety with a therapist, who can help you find tools to address your fears.

Take care
 

lgelb

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Even if you cannot afford a therapist as you say, telehealth is often cheaper, there are many health anxiety forums that can help you, and you can message with people as well. Try reddit r/MuscleTwitch

As others have noted, we can find no reason for your concern, and if you don't deal with it, it will take over what could otherwise be a happy, healthy life.
 

affected

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that is correct, I'm not saying it is rare, I'm saying ALS does not happen that way.

I hope you can work with doctors to get the help you need. It is not here, but I wish you the very best.
 

KimT

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I suggest you control the things that are in your control. Get your diet healthy. Exercise again. Set a time limit for sitting in front of a monitor. Meditate. Expand your social life. Find someone with whom you can talk to whether that is video or in person. Many therapists have sliding scales.
Please try not to fall into the rabbit hole of ALS. It isn't healthy.

Let your doctors help and believe them.
 

Worr1esome

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Hey all, thank you for responding. I’m not posting this as necessarily an anxiety soother. This is mainly out of concern because of these symptoms, they’re really somewhat bothersome .. my left shoulder has been feeling fatigued lately and am worried this could be the start ? .. idk :/ ..
 

affected

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stop. please. go see a doctor again if concerned
 

Worr1esome

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my NP evaluated my hand. She told me that I probably strained something or some sort. It’s still worrisome. Logically speaking I assume that my shoulder pain is probably from leaning on it when on my PC(?)
 

ShiftKicker

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Hello-

That is something you will have to work out with your doctor. I think we've provided as much help as we can for you. If you have further questions about your health, make sure to visit with a health practitioner.

I am closing this thread, please do not open another.
 
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