Symptoms ongoing for 3 weeks

[bleegm]

Hey y'all, I'm a 26M who's been dealing with fasciculations for almost a year now. I've also been experiencing atrophy but its not specific to one area. My entire body is atrophied from shoulders, to arms, to hands, to legs, to thighs, etc. So obviously its not extremely noticeable atrophy and I mostly contribute that to may lack of working out (haven't been to the gym in over a year) and also chronic stress. I've been dealing with a variety of health issues for a year and finally might have a working diagnosis which is a rare blood disorder (not like blood cancer, but just a chronic disorder). Also since my twitching has been around for almost a year, I definitely did not attribute that to ALS given the lack of weakness, etc. Also my twitching (although it started in the feet/legs) have transitioned to all over body. No specific hotspot and lasts maybe about 1 min or two between episodes.

But more recently, about 2 weeks ago, this all changed. So i began to have pins and needles feeling bilaterally in both palms of hands. At first i attributed this to possible neuropathy as my condition can attack the nervous system. Didn't think much of it besides maybe supplementing with B12 and getting my doc to check it out. Fast forward a few days after, I go to my docs to get my injection for my condition. Its my second time getting the injection so i don't believe that its an immune reaction issue. Anyway, this time, I got the injection near my tricep/shoulder area as opposed to directly on my shoulder or stomach like i usually do. After the injection, it hurts and aches more than usual but it goes away by night so I forget about it. However, about 2-3 days later, my left arm (the arm that I got my injection in) starts to feel very odd. It feels very tight, pressure like, and weak. Even at rest, it feels like someone is actively working out my arm when I haven't work out in over a year. The easiest way I can describe the feeling is the feeling that you get during an arm workout and you start to feel the burn (not a temperature feeling burn but like muscle fatigue kinda burn). But like all day. This makes my arms feel very weak and like its constantly giving up, yet I can still do all things. But the things that I do a bit weirder in feeling. It feels very sensitive and weak. Like I can hold up my phone for like 5+ min but the entire time, my arms feel weak, shakey, and similar to how it feels when your holding your arms up over your shoulders for too long. This is a constant feeling and my fingers also feel like its locking up/spatisticy but I can immediately move it in every direction that I want even when that feeling occurs.

Now I'm not too sure if this is the beginning of possible ALS. If this weakness is the sign that something is bad or if this is a possible nerved related injury due to the injection. What makes me worried is the unilateral nature of the weakness. My arms feel so tired, weak, fatigued, and like its about to drop but yet I can still drive, type, hold a 32 oz water bottle with just fingertips, etc. Not sure if this is the beginning stages and if failure will start to come or not. Neuro appointment is all the way out to August so nothing I can do till then. Just wanted to get some thoughts or opinions? Only affected area is left arm. I still get pins and needles soemtimes, but its subsided a lot. Not sure if its because I started taking B12 or not, but its less noticeable and frequent now. But when do i get it, its still bilateral.

Any thoughts or advice will be appreciated, thank you.

 

[ShiftKicker]

Hello-

This link- Read Before Posting- should reassure you about it not being ALS. Twitching is super common and can mean any number of things. You do not report the hallmark symptoms of ALS- clinical weakness- and you report having other health issues and symptoms that are not part of ALS. Your best bet is to keep working with your doctor to deal with that and not add anxiety about ALS on top of your current health concerns.

Take care

 

[lgelb]

Occasionally, an injection goes slightly into the wrong spot and causes the issues that you describe. If that's the case here, it does gradually get better, but there is not much to do but keeping up with safe exercise and waiting it out. I would certainly let the office know.

 

[bleegm]

Hello,

Before I start, I really want to say I'm truly sorry for all the pain and suffering that this disease has caused for the people who are affected. This disease should've been eradicated over 100 years ago, yet humanity still focuses on money making treatments. Going through this experience firsthand, I can only imagine the fear and unfairness that all of you had to go feel and might still be feeling daily.

So for the past 3 weeks, I've been having very specific symptoms that makes me question the possibility of ALS. For reference, I'm a 26 yo male, no family history of ALS (at least none diagnosed, not sure about genetics), and who has been twitching for almost a year now. Last summer I went through a very stressful period in my life which prompted twitching.

Up until 3 weeks ago, I thought that my twitching was just BFS and did not really impact my daily life except it being annoying. However, that changed when I woke up with a slightly weak and tight left arm 3 weeks ago. It was so sudden and noticeable from the get go. I was driving to work and for some reason, my left arm felt so heavy and tight to the point where I had to put down my arm and use my right arm. At first I thought it was just something transient, but this feeling has been here daily and got somewhat worse as time went on. Finger on left hand also feel a bit abnormal. My typing is more sporadic, I feel like my finger dexterity is not as fluid (grabbing things and trying to twirl it around seems foreign now).

Also in the beginning phases, I had really bad stiffness in my fingers. Like even at rest, my fingers would feel very stiff and the location of which fingers feel stiff would change daily. Currently, finger stiffness at rest has subsided but it still does get stiff when gripping something hard and letting go. I understand that ALS stiffness (spatistcity) is very specific and with my limited knowledge, I tried to test for it and don't think its that (even though fingers felt stiff, I can still move it without any locking or resistance in any in direction). However, my weakness in arm has been consistent. I believe it might be stemming from my triceps as my arm quivers and shakes at the slightest activity. For example, using my laptop with forearm on table and elbow off the table is making my left arm quiver and shake. Using my phone with left hand causing my arm to shake after only 2-3 minutes of use. Scatching with my left hand will cause my left forearm to burn in a matter of secs compared to my right.

However, I understand that ALS weakness is about failure, not feeling. I worked out with my PT yesterday and was still able to do 80 pushups, 40 lat pulldowns, squats, etc. But oh my the soreness today was intense compared to my right side. Its almost a 2x or 3x difference in soreness just like how the muscle fatigue was compared to right side. So I guess I just wanted to ask: Does early ALS usually begin with muscle fatigue due to other muscles compensating? Its been going on like this for 3 weeks but no actual failure yet that I encountered. But what worries me is the unilateral nature of my symptoms. Only affecting left side including triceps, forearm, hands, and fingers. Also to my understanding ALS usually affects on focal area prior to spreading but it seems like my entire left arm limb is affected to a degree (def my tricep and fingers)?

I also started to have difficulty swallowing this past week. No slurring or chocking yet, but salivia is harder to push down with throat. Seems like theres a glob stuck on the back of my throat and despite me trying to wash it down with water, it seems like the water just fully passes this glob and does nothing to it. Going to see neuro in a month but these symptoms have definitely gotten me spiraling, thinking about how to plan my affairs, what I want to do with the remaining time left if this disease is confirmed, etc. I'm definitely not mentally sane right now if you couldn't tell lol. This progress seems extremely fast to have left arm limb onset + bulbar in just 3 weeks but I guess anything can happen with this disease.

Again, I appreciate any feedback and wish you all peace and no suffering throughout your journey with this horrible disease.

 

[lgelb]

I merged your threads. Please stay in this one.

If you think preventing, better treating, or curing ALS would not bring in money, you are fortunately mistaken.

You have presented no additional reason to worry about ALS, equally fortunately. If you haven't presented to a PCP about all this, that's where I'd start.

 

[bleegm]

Thank you for that and apologies if my statement came off as rude. I meant that even though this disease has been around for awhile, there has been minimal improvements in treatment or testing for those with ALS and I hope that changes in the future.

To my symptoms, could you please tell me why? Not trying to be combative, but I just want to mentally prepare myself for what I might be dealing with here. Especially cause I saw that failure does not happen overnight. So I'm thinking then whats the process before true failure occurs? Thank you for all of your help

 

[lgelb]

There have been some significant improvements, actually. But anyway:

There are lots of things that don't happen overnight. That does not mean that they apply to you.

Soreness after exercise is not an ALS thing. Motor neurons that control the muscles don't get tired. They die. So one day, you can't do as many pushups as you used to. You can't power through.

This is unmistakeable and does happen overnight. That is not the same as feelings of heaviness, weakness, fatigue, shakiness, or soreness.