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storch

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I will start by saying I've had bad anxiety over the past two years. Without going into too much detail as I know it's not important, my brother died, my parents are alchoholics, I got chronic tinnitus from a concert, I woke up with extreme derealization and panic / anxiety and my life was never the same. That being said, I wake up every morning with extreme pain and no doctor has been able to tell me why.

Unrelated to that, and the reason I'm here. My Vitamin D levels are low. I recently woke up with an intense fasciculation in my rib that stayed for 2 days, then went ALL over my body. My legs & arms (both sides) feel extremely weak and stiff, and when I exert myself too much (go on a walk through the mall) they will burn that night. When going up a flight of stairs, it feels like I already went on a hike and my muscles are fatigued and very weak. I can't do as much as carry 10 pounds for one minute without my arms feeling weak. I am 24 years old.

I am slurring my speech. When not thinking about it, I'll be talking to someone and stumble with my words. My jaw and tongue feel heavy and almost like I sucked on ice and tried to talk. This has been progressing lately.


I am so frustrated and reaching out for help, because the neurologist I saw wouldn't even preform any test, stating "you are too young for als / ms is unlikely, have you thought about narcolepsy?". I waited four MONTHS for this guy, and now I have to wait another 3 while my symptoms seem like they are getting worse before I can get into someone else.


-Bodywide fasciculations
-Weakness in arms, and especially in legs. Feeling like I have to try extra hard not to stumble.
- jaw / tongue stiffness and weakness. Messing words up frequently and feeling like talking is difficult
-stiffness in limbs, as if I have to drag my feet to get anywhere.


I am terrified. I am already borderline suicidal because of the previous issues, and I am not strong enough like anyone here to live with an ALS diagnosis. Doctors have failed me again and again, and now I'm waiting anxiously and while I feel like ALS is progressing to find another one. I know that ALS is failing, not feeling, but wouldn't it be progressive? Wouldn't I feel weak and stiff before actually tripping? And the speech issues, aren't they right on with ALS?

Please, any advice from someone more knowledgeable than me would be helpful. Doctors don't seem to care and I feel like if there is a god, he wants me dead.
 

storch

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Furthermore, I'd like to apologize in advance if this post offends anyone that actually has ALS. Due to the trials in my life, I am weak, I don't feel like I even have a life anymore already, and ALS would just solidify that. I am here for your knowledge, and then I will leave and not bother anyone here. I'm only 24 years old, and these symptoms are not in my head. My body is weak, and I can't even speak. This is getting worse and I'm terrified, please try to understand, and thank you so much for any reassurance you can give.

I also suggested lyme to my doctor. I am in Utah, so he just laughed at me and wouldn't give me the test. I have had a brain MRI with one non specific white matter spot found, which they felt wasn't due to MS. I have many other symptoms, but I'm here to address the ones above. Thank you so much to anyone that can respond.
 

Atsugi

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Your post shows you're young enough that you're not really familiar with what stress can do to a person. I am.
First, let me say you don't have ALS. You didn't describe ALS. Your symptoms point away from ALS.
I suppose it's possible you do have another disease, but I'm not a docotr so I can't advise you there.
But I do know ALS pretty well, and you don't have it.
 

storch

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Your post shows you're young enough that you're not really familiar with what stress can do to a person. I am.
First, let me say you don't have ALS. You didn't describe ALS. Your symptoms point away from ALS.
I suppose it's possible you do have another disease, but I'm not a docotr so I can't advise you there.
But I do know ALS pretty well, and you don't have it.

What symptoms are pointing away from ALS? I just feel like everything I've read and know points towards it. It's especially scary how weak my legs feel and how it's hard to have a conversation with someone without slurring words. Thank you for your response, I appreciate someone more knowledgeable than me helping me about this disease take time to post.
 

Atsugi

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To answer your questions specifically:
No, you wouldn't feel weak before tripping. ALS is a very well "targetted" disease. It destroys motor neurons and only motor neurons, so the corresponding muscles simply don't contract, no matter what. There's no feeling of exhaustion from trying to contract the muscle. There's no feeling of weakness, either.

Stress can manifest itself in physical ways very powerfully and might account for all of your symptoms.

One more thing. Suicide is stupid. My dad died of dementia, my wife died of ALS, my mom died of heart disease, and my aunt died of CHF. All in a row. I was suicidal, planned it, and moved toward it, but then I realized I had simply forgotten to take my anti-depressant medicine for several days. One pill later, and I was fine. It can really make a difference.

Possibly you've gotten a disease of some sort, but you definitely are depressed and you need help. If you feel suicdal, go to the ER and say so, so they can take appropriate measures to save your life. You're young and have much potential for a happy and successful life.
 

Atsugi

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We wrote a permanent post and stuck it to the top of this subforum. "Do I Have ALS?" Read it.

A lot of good internet sites list symptoms of ALS, but they're not quite exactly right. You have to have personal experience with ALS, as we do, to understand the difference.

It's hard to describe the nuances of the symptoms. And frankly, we don't like to tell people exactly what symptoms they need to have ALS--because many people will suddenly feel those symptoms.

Again, while losing a brother is REALLY very rough to take, I can reassure you that eventually, life gets better. You should see a full-fledged psychiatrist--an MD--who can treat your depression and give you some therapy. I had a couple of rough parents, myself, so I understand that the help your parents give might be "worse than nothing." Indeed, I joined the military and didn't speak to my parents for 8 years. Funny thing, it didn't change them at all. A good therapist can help you.

You might have to change doctors and therapists several times during the year to find the best treatment. You might have to pay cash. But it is worth it in the end when your life is finally on track.
 

storch

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We wrote a permanent post and stuck it to the top of this subforum. "Do I Have ALS?" Read it.

A lot of good internet sites list symptoms of ALS, but they're not quite exactly right. You have to have personal experience with ALS, as we do, to understand the difference.

It's hard to describe the nuances of the symptoms. And frankly, we don't like to tell people exactly what symptoms they need to have ALS--because many people will suddenly feel those symptoms.

Again, while losing a brother is REALLY very rough to take, I can reassure you that eventually, life gets better. You should see a full-fledged psychiatrist--an MD--who can treat your depression and give you some therapy. I had a couple of rough parents, myself, so I understand that the help your parents give might be "worse than nothing." Indeed, I joined the military and didn't speak to my parents for 8 years. Funny thing, it didn't change them at all. A good therapist can help you.

You might have to change doctors and therapists several times during the year to find the best treatment. You might have to pay cash. But it is worth it in the end when your life is finally on track.


Once again, thank you very much for the response. I guess I'm mostly concerned with the weak jaw when talking, weak tongue and slurring of speech, as I read this is a big tell towards MS that is more progressive in nature rather than immediate, if you or anyone else could elaborate on that great, if not then I'll take your word for it, as it's clear you have been through enough to know the disease. Also, I'm very sorry for the tragedy you've endured. You must be a very strong person and I'm grateful for your advice.

I'm sorry to invade your forum otherwise, the spiral downward in my life has been absolutely terrifying. Derealization makes me feel like I live in a dream world or as if I'm on a drug and can't come down or recognize people I love. Also, I had just MET my brother, as he was put up for adoption when he was a baby. He was 27 when I met him last year and was basically the same person as me, like winning the lottery, then died 3 months later from an overdose. You hit the nail on the head with the parents help being "worse than no help", especially with the extremely abusive nature in which I was raised. The tinnitus / ringing in my ear is also life-altering hard, as I can't experience silence anymore. I used to be happy and enjoy life, but for the last two years I have felt like I'm living in hell, which is why even with the rarity of an ALS Dx, I've thought it was still a possibility with the nature of how my life is going.

Anyway, I know no one has time for me here and probably have more important things to deal with than me. I just have gone to doctor after doctor (psychologist, nuerologist, GP, Therapist) and none of them have been great, as you said it's torturous finding someone who can actually help, and I am completely alone in this world. These symptoms are also very real, and as I said the tongue / jaw / speaking difficulties are throwing me in a panic right now. Thank you for any more advice you can give.
 

gooseberry

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I agree with Atsugi. My mother was a toxic human being in my life. I didn't speak to her for seven years because she chose it. My mother, a 12 yr old cousin , grandmother, and father died with in 13 months. I almost lost my son. A few years later my sister died. Seeing the right medical professional really helps. They will work with you to find the right medication you need to be stable and a cou selor or psychiatrist who can meet your needs.

If you are on the edge, please go to the er or call 911 and tell them you are having suicidal thoughts. There is help out there.
 

gooseberry

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One last thing, stress will destroy your body. Lack of sleep,bad nutrition, the crazy stress hormones, all add up to weird and different things happening with your body. Rest, hydration, good quality food-fruit,vegetables,lean protein, and complex carbs are a good place to start. No caffeine just water. You will feel much better.
 

GregK

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> I read this is a big tell towards MS ... if you or anyone else could elaborate on that

This is an a MND (ALS) forum, our members have a pretty good handle on ALS but probably little knowledge of MS.
 

Atsugi

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Hi, again, Storch.

I understand about the tinnitus. The navy gave it to me decades ago. I haven't had 30 seconds of silence since 1996.

Maybe I'll share some perspective. Being a military man since birth, I learned to think of everything as a mission, and to think of setbacks as tactical repositioning. Sometimes, just getting through the day is a mission. And when life hands me another setback, I just consider it a new starting point from which to continue the mission.

I stopped taking things personally long ago. I stopped believing in omens decades ago, thinking that there were "signs" in life or that life had it out for me. Honestly, neither nature nor life care one way or the other about us, so we just find ways to enjoy each day as it comes.

Maybe that won't help. But it might.
 

storch

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I'm sorry, I meant ALS.
 

storch

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> I read this is a big tell towards MS ... if you or anyone else could elaborate on that

This is an a MND (ALS) forum, our members have a pretty good handle on ALS but probably little knowledge of MS.


Sorry, I meant ALS. The weakness in jaw / tongue / trouble speaking, is this not a sign towards ALS?
 

storch

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Hi, again, Storch.

I understand about the tinnitus. The navy gave it to me decades ago. I haven't had 30 seconds of silence since 1996.

Maybe I'll share some perspective. Being a military man since birth, I learned to think of everything as a mission, and to think of setbacks as tactical repositioning. Sometimes, just getting through the day is a mission. And when life hands me another setback, I just consider it a new starting point from which to continue the mission.

I stopped taking things personally long ago. I stopped believing in omens decades ago, thinking that there were "signs" in life or that life had it out for me. Honestly, neither nature nor life care one way or the other about us, so we just find ways to enjoy each day as it comes.

Maybe that won't help. But it might.

That's awful, I know a very large portion of tinnitus sufferers are veterans, I'm sorry you have to deal with that too.

And no, that's very wise. The worst part about each setback, is readjusting to it. Unless I look at it in a perspective such as the one you use, it just destroys me inside. Especially at the rate and frequency of how these things have been occurring. It is depressing being that I am young and see most of my friends enjoying their lives like I used to, and can't anymore. Habituating to such life changing things is not easy.

I don't necessarily believe in a god or that anyone cares or is doing this to me, it's just something I tell myself as this onslaught of pain and misfortune seems never-ending.

Thank you again. I know I'm not the only one suffering, nor am I any more important than anyone else. I just want it to stop. Would you think even with the tongue / speech / jaw weakness and symptoms, that it points away from ALS?
 

Atsugi

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You should have your speech checked out. Could be a lot of things. Just doesn't sound like ALS.
Our bulbar patients seem to start with a paralyzed tongue, not a jaw problem, but I'm not an expert on bulbar. So maybe you could start a thread called "possible bulbar" in this subforum and see what our bulbar experts think.
 
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