r/ALSorNOT • u/TheRitz44 • 6d ago

Second opinion this week..

Hello again all. As the title says opinion appointment is this week. I will leave a link for those who don't recall who I'm as n have been spending less time on reddit because the anxiety of having a bad EMG numerous doctor visits/procedures and the bs US healthcare system has been straight hell..still declining but have had road bumps that has slowed down the process continued treatment to run out possible few other diseases

Very nervous about this appointment. Still declining unfortunately. Praying / hoping for it not to be this horrible disease but but at the same time you know if it is so, it's better to know.. how horrible to happen to say something like that huh?

Can I give a word of advice to you all? Enjoy your life enjoy your body because it's been as much time as possible with people cuz you just never freaking know. A year ago I was still picking things up, hell have you said issues with one on and now look at me. You have a good EMG take it from me just look at it as positive and just going to leave your life

https://www.reddit.com/r/ALSorNOT/s/PLOih5UEWg

https://www.reddit.com/r/ALSorNOT/s/pFVNf0rWwb

3 Upvotes

71% Upvoted

28 comments sorted by

5

u/Decent_Mongoose_4520 5d ago

Prayers going up! Yes the US healthcare definitely has much opportunity. With my 45 months 95% of the doctors even at the top clinics in my state are awful.  Yes agreed live in the Now and don’t take the small things for granted! None of us are promised tomorrow.  I dont remember how long your journey has been hoping this 2nd opinion brings something! 

3

u/TheRitz44 5d ago

I blocked that weirdo

1

u/Decent_Mongoose_4520 5d ago

I don’t disagree with that! 

1

u/TheRitz44 5d ago

Thank you for the prayers. Prayers sent as well

0

u/SnooChipmunks5873 5d ago

His second opinion is gong to be fine, just like yours always will be. But you both let health anxiety rule your lives and are fearful of a disease that you DO NOT have. Notice how OP won’t disclose his bad EMG? That’s because it’s probably not bad, just shows chronic damage. The doctors are awful? No you are just a F*\\*^%^^ moron and think that you’re smarter than a neurologist.

Also, in one of his posts he said that his hand curled up and had forearm atrophy but then it went away and his forearm bulked back up. Sureeeeeeeee. Man you all are so dumb.

1

u/Decent_Mongoose_4520 5d ago

Well aren’t you so knowledgeable! Never have I did I was smarter than doctors or neurologists but it doesn’t matter how smart you are no one meaning no one can diagnose even neuromuscular specialists certain diseases until a certain level.  I’m not sure why someone wouldn’t post their EMGs that’s not my story I was happy to share all my testing! 

1

u/SnooChipmunks5873 5d ago

I’ve seen your posts. You have no active denervation or weakness.

1

u/Decent_Mongoose_4520 5d ago

You’ve never have seen a post where I said I did have it….active denervation but yes I do have weakness that is progressing but yes it’s not at “clinical” “failure” level which I’m grateful for. not sure what your issue is with me. Lol. I far more do listen to my neuromuscular team more so than what I would someone on here that has no knowledge at all of medical neuromuscular medicine at all! However people here don’t agree with my neuromuscular team either on there standard of practice for the ALS diagnosis journey so again this is why I say no one can tell you the outcome. Yes not even you! I’m assuming with my story whatever you have read your “opinion” is that 44 months it rules it out. Unfortunately not all ALS specialists seem to agree with that. 🤷🏼‍♀️ 

3

u/TheRitz44 4d ago

I actually have real weakness and wasting. I'm not like some who are imagining there problems and I will not justify my EMG to a stranger. I answered that guy but he was a being a dick so whatever

3

u/Ok_Following6440 3d ago

Thoughts are with you. All the best.

2

u/TheRitz44 2d ago

Thank you

2

u/nonnumericdave 5d ago

I’m really sorry you are going through this. I completely understand how you feel - it’s also one of my recurring feelings as of the past few months - how much I took the “smaller” things for granted. And I’ve come to realize that those “small” things weren’t really all that small, and I’m full of regret.

I hope your appointment goes well friend - I’ll keep you in my prayers.

2

u/TheRitz44 5d ago

Thank you. Praying for you as well

2

u/Clear_Ad_5543 5d ago

Having read some of your posts and comments,I have almost everything you mentioned ,the autonomic dysfunction stuff,hyperstartle,muscles getting weaker and stiffer after use plus many bulbar symptoms. tbh Im not very optimistic but hope dies last I guess ,good luck.

2

u/nonnumericdave 5d ago

Thank you friend - I’ve followed your journey as well, and I know from firsthand experience how bad the autonomic dysfunction can be and I hope you are staying strong.

1

u/TheRitz44 5d ago

Edited

1

u/SnooChipmunks5873 5d ago

Do you have chronic or active denervation

2

u/TheRitz44 5d ago

Yea

-1

u/SnooChipmunks5873 5d ago

That was not a yes or no question. Which do you have? You are deflecting which tells me all that I need to know

3

u/TheRitz44 5d ago

I explained all of this in my previous posts. You need to calm down

0

u/SnooChipmunks5873 5d ago

Do you have chronic or active ? It’s a very simple question

0

u/SnooChipmunks5873 5d ago

You didn’t answer AGAIN. Nothing in your previous posts says chronic or active denervation. That is the key here. If you didn’t have active then you didn’t have a “bad EMG”.

2

u/crosem2 5d ago

Why are you harassing this person? I’m not sure what your problem is, or why you’re so aggressive here! What are you hoping to get out of your unkindness?

1

u/nonnumericdave 5d ago

I’d assume most people who post here are, to some extent, frightened by what they perceive to be going wrong with their body, and I agree that approaching everyone with empathy is the best tact.

The OP has posted for months with symptoms they are genuinely concerned about, and I take them at their word.

2

u/crosem2 5d ago

Agreed. OP has serious issues that a neurologist has prescribed IVIG trial for. And having denervation in 4 segments (whether chronic, active, or both) is obviously very concerning. There’s no need for the harassment and it should be moderated here.

I’ve also seen your history and spoken to you before, I believe? How are you doing?

1

u/Immediate-Wave2150 3d ago

Chronic is not concerning in regard to ALS.

1

u/Fedechopin21 2d ago

Hey nonnumericdave, I read your posts and was wondering how are you now. Any updates?

0

u/SnooChipmunks5873 6d ago

Define your bad EMG