u/TheRitz44

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

So I noticed that one side of my tongue looks slightly lower and then I asked my spouse who confirmed that it actually was. Along with the tongue twitching that is definitely not good for me.. I had a very bad EMG and progressive weakness.

In case you don't know who I am, I'm the one that supposedly may also have an autoimmune disease but again the autoimmune disease doesn't really affect your tongue so..yea. What does give me hope is that after the IVIG treatment my curled fingers they uncurled, I could actually extend a few out and that's very much not something that ALS does is it doesn't allow things that are damaged from disease to return. Supposedly are few autoimmune diseases that actually do rarely affect the tongue.

Have a visit with the ALS specialist next month for a second opinion so it's going to be very stressful until then...

They tell you to stay strong and believe..it's hard..

IVIG guy again..so far my fingers have unstiffened and have not (🤞🏾) returned to the curled position they were recently in, it has been over a month. Also my wife says my forearms appear to have bulked up after the first week of treatments and there seems to be slight tone where there was wasting.

What I have not regained is the ability to lift my arm(s), less atrophy in other key areas, more balance while walking, strength in said hands/fingers, etc.

I have a possible second opinion with an ALS specialist next month as well....so here's to 🙏🏾

I'm the guy who is going through IVIG treatments to rule out ALS..I will link previous posts.

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

https://www.reddit.com/r/ALSorNOT/s/u7SjqMx857

I was finally able to see a neurosurgeon. The surgeon doesn't see enough damage in my neck to warrant surgery. He isn't very familiar with ALS, but when I told him about the improvements with the IVIG he replied, "I doubt that would actually help at all or am I mistaken?" I of course replied not at all. No cervical stenosis. So it's either ALS or autoimmune..or possibly something else..

I will update after the second treatment of IVIG. I haven't regained much strength but I do feel more nerve connections in certain areas. Praying for continued improvements

I don't see this talked about enough in the subreddits..maybe I'm one of the few who experience this, but holy shit its a new form of torture. There is no certain time it just "happens". It's so damn annoying. Reading, watching TV, etc. BAMM..acid tears. It's fun. This started a few months ago out of the blue

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For those of you who do not know what this is, it's not literal acid tears but severe burning sensation in the eyes. But damn if it doesn't feel like someone dropped something in your eyes. The tears follow

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Edit..ALS and autoimmune diseases can cause Acid Tears

So the doctor agrees we should continue to try the IVIG because I do feel different: fingers have gotten more flexibility (not much strength but flexibility), less wasting in certain areas, more stamina (at times), etc..

Also I have been able to curl my arms with assistance, which my wife doesn't recall me being able to do. It started with a slight increase and has progressed to me trying as hard.

I continue to ask for prayers, thoughts, etc..thank you

So today is my last day. From day one I noticed increased energy (I actually couldn't take a nap), after that day some flexibility in a few fingers I couldn't actually move very well, noticeable strength in my dominant arm (odd because my non-dominant arm has been carrying me since the symptoms started to get much worse), less twitching..but still not able to lift my arms so that's a concern. I continue to ask for your thoughts and prayers as I'm still trying to stay positive 🤞🏾🙏🏾. Thank you

https://www.reddit.com/r/ALSorNOT/s/e540h8lvfJ

I have been dealing with a more than likely upcoming ALS diagnosis for nearly a year, symptoms for over a year and a half now. Upcoming treatment and then I will have to have a followup with my neuro to see if there are any improvements. A few months ago, while doing any examination before receiving PT, the lady looked at my files and said, "OMG I saw your files and couldn't believe it said "Possible lower motor neuron disease! How are you so calm? I would literally be in tears!"..lady I'm at the point where I'm leaning more towards it every single day but I'm keeping the hope that's in fact an autoimmune disease because that's all thats left for me at this point. I keep pushing thru the pain, discomfort, and the continued weakness for my family but I'm just so fucking tired..the scientific people tell me basically I'm fucked while the religious people tell me to pray because you never know. It's been an exhausting rollercoaster..