5 Months in and still experiencing symptoms.

[MoeG]

prev thread here: ALS Anxiety for 3 months (28 y/o Male)

Hey guys, hope i can get some comments here for anyone who has been through a similar situation as me. I felt a bit better at the start of this year but i find my self going down the rabbit hole of the "big bad" again. Mid September of 2024 I had weakness in my right leg and twitching around my body, now when i say weakness i don't mean "clinical" weakness as i could still move my legs and do a calf raise etc. I got an EMG/NCS done at the end of October of that same year and everything was clean, and my clinical exam also went well. I also had a MRI scan of my head and spine during this time that was also normal. Funny enough as soon as i had finished my EMG i noticed that the weakness had moved to my left leg now. I also had an NFL Chain plasma test done near the end of November and that was also normal and not elevated in my age group.

Fast forward to the new year i saw my Neurologist at the time who examined me again and went over my previous tests that i had done and only noticed that i had hyperflexia and brisk reflexes but nothing other then that. After that i had a few weeks of tremors and shakes i would get around my body that i at first attributed to anxiety but then my mind went over to Parkinson's. During this time i had not had much weakness in my legs although at the start of February the weakness had come back more so on my left leg and around my ankle. I felt as if i was going to trip any moment even though i could still walk and do a calf raise and walk on my heels. I finally had another EMG/NCS a few days ago, which was approx 4 months after my last EMG. It was all clean yet again and the neurologist said i was strong and still didn't see any signs of weakness, although did mention again i do have brisk reflexes.

Even after all these tests I'm still experiencing these leg symptoms, especially in my left leg/ankle. Whenever I'm walking i feel as if I'm going to get a foot drop any moment or that I'm gonna trip. My left leg constantly feels like its going to give out and shakes. I know anxiety can play a huge part in all this but i feel like I'm going down the rabbit hole again of the "big bad" and don't know what to do. I'm a 28 year old male with no familial history of any neurodegenerative diseases. I'm just so tired of this and my symptoms are causing me to have more anxiety. Its just a constant loop. Some advice would really help. I appreciate anyone who took the time to read this.

 

[lgelb]

My advice is to act as if you've never heard of ALS and see how far that takes you. And I'd do whatever it takes to get more/better sleep, nutrition, stretchy exercise, activities that give you inner peace.

Brisk reflexes can relate to stress and all the stressors, too, you know.

In other words, if you acknowledge but never test the theory that anxiety is a big factor in this, and knowing how it mushrooms, you will forever be between a rock and a hard place. Time to break the chain.

Of course, get counseling if you need it.

 

[ShiftKicker]

Advice? Find someone to help you find some tools to deal with managing stress while you work with your doctor to mitigate symptoms. You've been cleared of ALS and don't report the hallmark symptoms of ALS/MND, so one of the first things to do is not visit places that focus on it.

 

[MoeG]

I appreciate these comments, just wanted to also be clear. On my most recent EMG findings the neurologist posted this saying " Left vastus lateralis has nonspecific tremulous recruitment, but otherwise normal." Is this still considered normal if there still is a bit of tremor noticed in that muscle? Is this still considered a "clean" EMG? They told me it was but after reading the full report, that sentence has worried me.

 

[ShiftKicker]

You have been cleared of ALS- which has specific patterns on the EMG and which were not detected during your exam. If you have questions about what your EMG results might mean, the person to ask is your neuro. Basically, if your neuro says normal, then you must believe them. You can certainly ask them to clarify and perhaps they can provide further reassurance.

 

[lgelb]

"Nonspecific" in this context means there is no concern for life-limiting disease so I would take that and run with it.

 

[MoeG]

Sorry for the bother again but i just have an update that i have been struggling with and would like your opinion on. On my 2nd EMG that i had done this year, they tested my left leg which i was having symptoms in, and that was clean, but of course right after that, a week later i started having weakness in my left arm. This constant rumination about whether they missed my left arm is very much getting to me, even though i didn't have any symptoms of my arm being weak at the time of my appointment, i find that I'm being hard on myself for not telling them to test that area. Besides the point, I most recently had a Normal CK test but currently still feeling these symptoms. My GP tested my strength and said both arms were equal in strength and nothing of interest. I'm still able to twist a key in a lock on my left arm and i can move all my fingers, I can also raise both arms over my head. In terms of physical activity, since i haven't been to the gym for long i can only do 15-max 20 pushups until I'm not able too.

What i am experiencing is that my left arm muscle feels weak when i hold my phone for too long, or when i have to clean a floor, when i use my left arm it feels weaker and strange. Even just holding my left arm in a certain position tires it out quickly, not sure if this is because i am not using my dominant hand since i am right handed. Constant burning and soreness come's at times too. I'm just confused whether the difference between my perceived weakness and clinical weakness is clinical means when you physically cant move said arm or fingers? I'm currently planning to follow up again with my neurologist but i know that once he does my clinical exam he wont continue any further with tests, and i also have a second NFL test that i will be doing soon just for a follow up. Not sure if this is needed but I'm doing it for reassurance which i don't know will be helpful to me.

Overall i would like to know if anyone has experienced muscle weakness in general and what they did to mitigate or stop it? I'm currently in talks with my doctor to get on Duloxetine and to replace it with my Lexapro which i have been taking for a very long time and at this point isn't doing anything for my anxiety anymore. I'm also currently taking some Lyrica, and when i really need it, Klonopin but i don't plan on regularly using it since i know of the addiction it can bring.

I guess the main stem of my anxiety is that all these perceived weakness symptoms I'm having is all on my left side. I've read ALS typically starts on one limb or leg that's on the same side. I already got the clear on my left leg with the EMG but i still experience symptoms there and on top of that, the weakness in my left arm has really put my anxiety in full effect. Before January, i was mostly worked up on my right leg being weak (hence the reason i got my first EMG which was clean) and also had difficulty swallowing and was worried about Bulbar onset but all those symptoms subsided thankfully. Now it feels like in this new year everything has gone to my left side.

Sorry for the long rant but i hope some advice on how to deal with this can help me out. Its been almost 7 months now and I'm living in hell, i feel like I'm going to be paralyzed very soon, even though my doctor reassures me that 6 months without clinical weakness is a very good sign and that i should not worry, and plus including the normal NFL test i did in December, Its like nothing can help me alleviate from my symptoms even though everyone around me is telling me i don't have this disease.

 

[lgelb]

Broken arms, stubbed toes, and ingrown nails all start and end on one side. If there is something wrong on one side, it will be wrong on one side.

You're also taking a boatload of CNS drugs that cause things like...perceived weakness. They act on the brain. The brain controls the nerves that control your muscles. You do that math. Why you are even on Lyrica, I do not know. You have not reported any indication for that. I would certainly ask since it's not a risk-free drug. After all, it is used in seizure disorders and overprescribed in everything else.

In short, there is still no reason to think of ALS here, so you are not going to be "paralyzed very soon," and when you say that, you can imagine the effects on the many here who are actually paralyzed and would give a lot not to be. They can't go to the gym, raise their arms, do all the things you can.

Do you really think your L arm randomly started feeling weak a week after the normal L leg EMG? Your mind is very powerful. But you are still the driver, if you take the wheel.

Maybe you are sleeping or lying on or overusing your arm -- especially if stress is torquing your sleep or babying your leg.

If you can't escape these groundless fears, please seek counseling. Tomorrow. Why wait? Why suffer?

Closing this thread so you can get to that. Please do not open another. There is no need.

All the best.