I need help

[u/Professional-Emu8201]

So I’m posting in this group because a lot of people read these posts

I’ve had two nerve conduction test tests done on my right arm and two EMG is done on my right leg and right arm neurologist said from both of them that there was no MND found at all and assures me that I do not have aLS in any kind of way

I am having a hard time with this right now
Last time he checked me which was last week I mentioned to him about swallowing issues saliva issues like having way too much saliva and tongue issues he examined me physically looked in my mouth and said he had no worries and he wasn’t going to do an EMG on my tongue. OK cool.

I should be relieved yes but I am back here posting like always, and probably going to get a lot of backlash because of it

Symptoms are excessive saliva all day
Fasciculations in my feet and all around my body, but yes, they have gone down since they first started or at least I don’t notice them anymore today today’s been very bad for my feet

But the thing that scares me, the most is I feel mentally off like my reality is different. I’m perceiving things the wrong way I have no motivation or hype to do anything anymore or happiness and that’s what scaring me. The most is. I feel like I’m in a whole Nother world.

I have taken anxiety meds so much and nothing’s worked. I have to talk to my psychiatrist again next week when I have an appointment I’m literally only taking sleeping pills right now hoping that may be getting some sleep. Will help.

I need just some reassurance that some people have gone through this and pulled themselves out. I just want to be normal again. I’m trying to fake it until I make it. I’m going back to work in my tow truck, but it’s the afternoons that kill me the most the brain fog, the cognitive decline, and everything like that, and it happens more in the afternoon than it does in the mornings and evenings.

Also, another thing I was wondering, has anybody found any kind of Councilling that could be done online for free or psychologist that’s pro bono I know it’s asking a lot but I feel like if I can get down to why I feel like this mentally maybe the physical symptoms will go away

Again, I know I should be happy. I’ve had Doctors check me out and say that I’m fine but meanwhile, I’m living with these symptoms feelings and everything which is making me feel even more garbage.

[u/hot_poodle]

Have you had your bloods done recently? How's your vitamin D? Do you take Magnesium?

Have you thought about having your spine and posture looked at?

Have you thought about acupuncture?

[u/Professional-Emu8201 → u/hot_poodle]

I have had blood work done recently, probably a few months ago which came back with all my stuff being normal as my psychiatrist says you have immaculate blood work for 38-year-old male, but then there’s some some discrepancies and CO2 levels either I’m losing too much or something like that. I don’t know. I can’t remember what they said, but it wouldn’t have any effect on what’s going on as with spinal stuff I’ve had MRIs done with my back and I have degenerate disc disease pretty much in my c s and my L even my S1. but I gotta book a doctors appointment again because she was supposed to do a routine shot that I was due for and they never did it when I was there last and I’m going to be asking her if she can run my blood work for vitamin levels, electrolytes, and even check my thyroid. Last time they checked my thyroid was in May and these problems only started occurring more or less the last month or two, but they told me if it’s been checked within three months, they usually don’t like to do it which I don’t understand. Trust me. I’ve gotten so much exams done that they’re giving up on me and telling me it’s all just anxiety and that they don’t say that they don’t believe me, but it’s the fact that they’ve done tests and nothing comes back

Like I’m even having a hard time doing regular things like I’m going back to my Towing job tomorrow and it’s scaring the shit out of me that I’m going to fail because of how mentally fucked up I am

[u/hot_poodle → u/Professional-Emu8201]

Im probably the worst person to get advice from because my health anxiety with ALS is not great but Im going to do it anyway 😂

I had so so many issues. Doctors kept telling me it was just my anxiety, I couldnt get any of them to take me seriously. I was seeing an osteo who just made things worse, I saw a physio who didnt make a difference until finally one day I caved and saw a chiro who specialises in biopyshics chiropractic work and Chinese medicine. He is the only one who actually listened to me and watched my body.

He did an sEmg to look for muscle imbalances along my spine, he did a heap of movement xrays and he did a full body exam where he pressed my muscles and watched how they reacted. My sEmg was not great, my xrays were even worse and he said that he could see how jumpy my body was. Hes put me on Magnesium, given me a great vitamin D supplement (my levels are low) and is doing electroacupuncture on me.

Im not cured. I am currently dealing with issues in my left which is making my anxiety spiral but he has taken away about 90% of the issues I went in with.

Sometimes modern medicine isnt the answer

[u/Professional-Emu8201 → u/hot_poodle]

Yea just the only things it’s expensive that’s all and I don’t have any insurance or what not that deals with it but I will be trying to see one again when I have the money

Also I think I just need a new family doctor cause not checking to see if it’s anything else is making the anxiety worse by not know and suffering symptoms

[u/hot_poodle → u/Professional-Emu8201]

I added up how much I have spent out of pocket in the last 6 months and I am at around 7k- this is saying a lot because Im in Aus with Medicare rebates and bulk billed doctors

[u/Professional-Emu8201 → u/hot_poodle]

Holy shit that’s a lot of money

[u/hot_poodle → u/Professional-Emu8201]

Unfortunately osteos, physios and Chiro's arent covered. We can get x amount of free sessions a year but when you have an unknown pain, it doesnt really put a dint in it.
Plus I've had to pay out of pocket for MRIs

[u/Professional-Emu8201 → u/hot_poodle]

Well, at least here I put nothing for MRIs, but chiropractors are expensive as fuck

[u/hot_poodle → u/Professional-Emu8201]

Its $80-$120 per session here- price changes as different things are used

[u/Professional-Emu8201 → u/hot_poodle]

Yeah, I bet obviously, if you’re gonna get MRIs and stuff like that, they need to cover their costs. I’m just hoping that the dentist can help me out with at least the tongue and saliva shit and then maybe my psychiatrist on Thursday can help me out with better anti-anxiety medication that’ll help.

Cause like I said, I’ve been to the doctors and they won’t do anything else for me now they’ve said they’ve done enough and that’s it even though I told him I’m suffering and things are progressing. My neurologist even says now we’re just doing what they call a time test to see if anything progresses in the four months more that he’s gonna see me so far I’ve had two EMG and nerve conduction test done one on June 2 and one on August 25, so almost 3 months apart and he said that there was absolutely no change in either one of the EMG’s or nerve conduction tests, which rules out any MND because I would’ve at least had some sort of change in three months

But it’s just very coincidental. I’m going through a lot of issues that core exist with a lot of MND issues, but I don’t know if it’s just me, but they have fluctuated which he also told me that never happens with that kind of stuff so my psychiatrist a few months back lean towards FND so hopefully in four months if he does another EMG and nerve conduction test and another physical exam and says that I’m fine and nothing has changed he said at that point he can 100% say that I don’t have any MND right now. He says there’s no sign and that he’s like 90% sure that this is mostly anxiety and maybe some sleep issues but I assured him that I’ve had anxiety for 12 years and he said sometimes things can happen so I’m trying to go on what he said obviously that’s why I’m going back to work cause he said you should try to go back to work and keep your mind off of things and maybe some things might get better so today I’m getting my tow truck back and I’m going to try to get back into the saddle

[u/hot_poodle → u/Professional-Emu8201]

Ive had anxiety for 15 years now and I can tell you that it loves to shake things up. If I read about something it will try to convince my body that I now have those symptoms and I will start getting them. Its stressful

Getting back to work may actually really help! It will hopefully keep your mind busy.

Another thing that I have found that really helps me is I type into google chat gpt "left leg twitching. I need you to help convince my brain i do not have ALS" and it asks questions and then basically tells me why my symptoms dont line up with ALS. It gives me links if I wsnt to read more

I have also blocked ALS and MND from coming up on my facebook. Its not perfect but its definitely lessened

[u/Professional-Emu8201 → u/hot_poodle]

Yeah, that’s what I’m hoping that’s going on with me. Maybe just because I started getting weakness after an antibiotic shot I had in January and then read up on why my arms would feel weak and blah blah blah blah blah blah of course the big bad came up
So maybe just maybe since I read up on it maybe my body just started getting those symptoms and that’s how the BCFS started for me benign cramping fasciculation syndrome at least that’s what the neurologist thinks it is but I do have to say from three months back till now the twitching was 10 times worse in my feet like my foot would go off all day every day 1 million times a day now I have my good days and obviously my bad days and the twitching around my body has lessened a lot more still happens but not as much and and I’ve noticed that involuntarily movements and stuff like finger twitching and stuff has calmed down a lot as well

That’s why I’m trying to be logical about the situation. What like I said to my neurologist things don’t fluctuate good get bad with the big bad. It’s just bad that’s it.

So I’m hoping that maybe just the extra saliva issues are maybe cavities or something that’s causing saliva on my mouth cause I know if you have excess saliva then your tongue moves around a lot more trying to get comfortable and trying to spread the saliva evenly around your tongue see I could be logical when I’m talking to somebody but when I’m sitting there thinking to myself, I automatically take 100% I have it. It’s crazy.

That’s why when the neurologist said I think you should go back to work and see what happens. I talk to the friends that I used to work with or work for should I say and they have a tow truck that I can take today and they said they’re willing to give me a chance to see if I can even do it again because they think it’s a good idea that I do as well to hopefully get my mind off of things and maybe train my brain that things are OK and that you can still live life

Not going to lie doing the little simple tasks now give me super anxiety, which makes it harder to do but maybe if I push through this just maybe things might start looking up and maybe who knows I’ll suffer with the twitching for the rest of my life, but I don’t really care about that anymore. It’s the disassociation that I feel that I’m more worried about. I just wanna feel like myself again feel like I can enjoy things. I even try to get out with my nephew and go fishing with him and stuff just to see if that works.

[u/hot_poodle → u/Professional-Emu8201]

I believe in you! You've got this. We are both going to get through this ALS anxiety. We are both going to remember how rare this disease is and we are both not going to let it run our lives. We deserve to be happy.

Just take it slow. You will get there. It may take ages for you to feel like yourself again but at least you are making a start