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jctucker

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Learn about ALS
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OH
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Middletown
Hello, all. First of all I'd like to say I've read many posts on this forum over the years due to my own health concerns, and I'd like to say thank you for being so kind and supportive of many who may or may not have ALS. You have done a great service to many people, I'm sure. I appreciate and respect this kind of kindness and support.

Now, on to the symptoms...

Oh, where do I start? I am a 22 year old male, and my list of symptoms is exhausting. It is a laundry list of things going back to a relative few symptoms that began in the summer of 2006...

In the summer of 2006, I had a particularly bad case of bronchitis. I got over it in about a month or two with the help of antibiotics, but a month or so later I started noticing that my rectum would become inflamed and irritated, often producing blood on toilet paper when wiped (hematochezia). I became kind of concerned about this and went to the doctor, who referred me to a gastroenterologist. The gastro performed a colonoscopy as well as an upper GI and found nothing except some hemorrhoids of the type that don't bleed. Meanwhile I noticed my stool was getting looser and looser. More of a paste than solid waste (no rhyme intended), and it would sometimes leak from my rectum without my control while passing gas, etc. Still unsure if this is related to the main chunk of symptoms, which began in...

...Fall of 2006. I went back to school for my senior year of high school. I started noticing muscle fatigue when going up and down the stairs at school. I started getting twitches once in a while in my calf muscles. I didn't think much of it. Over the course of the next year, however, it started getting worse. The twitches increased in frequency and location, and I started noticing that I had difficulty focusing sometimes, along with bouts of confusion (the best way I can describe it is "brain fog"). I also noticed some vision loss during this time. I went back to the doctor, who ordered an MRI. The MRI came back negative. I thought maybe I was just being a worrywart or whatever. Fast forward to the winter of 2007...

In the winter of 2007, I started noticing the twitches were becoming more widespread and definitely increasing in frequency. I underwent an EEG at the request of my PCP and it also came back negative. At this point I had researched MS and ALS some and was kind of scared of finding one of those. I thought the EEG would register one of them though, and it didn't, so I stopped worrying...again...stupidly. However, things have only gotten worse.

Over the next two years from then, I noticed my muscles getting progressively and progressively weaker, with things like drying my hair with a towel after a shower becoming exhausting tasks (arms burning, etc.) Twitches became all up and down both legs and arms and pretty much constant (instead of intermittent). I noticed that I was developing shortness of breath and difficulty swallowing. I went back to the doctor in 2010 at some point and described all of these things to him. He told me I had chronic fatigue syndrome and fibromyalgia after 1 visit and no labs (he was a physician's assistant). I didn't go back, until...

Yesterday, I went to the doctor again because I've started experiencing other symptoms. Over the last couple of weeks, I've developed pain in the muscles of my upper neck, what feels like difficulty speaking (I feel like I'm slurring words, but no one else seems to notice. My lips feel "clumsy" and the muscles I've described get very tired when talking). The brain fog is back, and with a vengeance. It's hard to concentrate at all on anything, and I often feel confused, especially when reading text. Over the last 6 months or so, I've experienced a lot of dry blood in my nose, at all hours of the day. Also over the last 6 months or so, I've noticed that I laugh or cry at much less funny/sad things than I used to. I don't really laugh or cry at inappropriate times, but if something even remotely sentimental happens in a movie or something, I'm weeping like a widow. If one of my friends says something even remotely comical, I'm laughing out loud. I described all of my symptoms to my doctor, who then did a physical examination that included poking me in various spots and asking if it hurt. He also looked in my mouth, shined a light in my eyes, and pressed against me in various spots and told me not to let him push me over. He did no reflex tests, etc., but when he came back in the room, he told me something to the effect of, "Look, I know you say you have these symptoms, and that they've been getting a little worse over the years or whatever, but I can't find anything wrong with you, so I want to develop a plan where we don't make the same mistakes we did before and we do other tests." Meaning he doesn't want to do another MRI and probably believes that half of my symptoms are made up, I guess. He ordered blood work done and I did it yesterday. I should also note that I am exhausted all of the time. No matter how much I sleep (when I can--I also have insomnia most of the time), I feel exhausted. Like when I wake up, I feel like I could literally just go right back to sleep. Anyways...

I honestly don't know where to turn. I feel defeated by my doctors (what few I've seen--I've put off seeing a doc for a long time because of no insurance and no money. My trip to the doc yesterday + labs cost me $55, and I'm unemployed, so this is difficult), defeated by my symptoms, and I don't know where to go. My doctor seems unfazed by my symptoms and told me I'm overweight and need to diet + exercise. Does this sound like ALS progression to anyone? If not, does it sound like any other MND? If not MND, then what? Please help in any way you can. I honestly don't know where else to turn.

Thank you for your time and reading this exhaustive wall of text.
 
I should also note that I have various other 'little' symptoms. Like I can't yawn properly--this is hard to describe, but it just feels like I can't fully yawn. Sometimes I hear a 'click' in the back of my throat while yawning and it allows me to yawn properly. I also choke on cigarette smoke (though I don't smoke often) while smoking at least once per cigarette, causing me to gag and almost vomit every time. I've been a casual smoker for years and noticed this problem worsening over the years. Weird stuff like that.
 
Oh, one more thing (so sorry for triple post, can't find the edit button!): my pulse is high and increases with activity, of course. I think this is related to shortness of breath? My pulse was 103 resting at doctor appointment yesterday.
 
JC - the edit button is in the bottom right of each post.

You don't sound like you have an MND, I hope that makes you feel better. You do have classic symptoms of chronic fatigue and fibromyalgia, it's easy to see why someone was willing to throw them out there with one visit. You also have some things that would fall under the term of BFS - benign fasciculation syndrome.

Here's the difficult part. Chronic fatigue, fibro, and BFS all produce a variety of real, troublesome, and difficult symptoms. None of them show up on tests very well, and none of them have very good treatment options. They also share the quality of having some doctors that believe they exist, some doctors that don't, with some merely ambivalent about their existence. Being young and uninsured makes the whole thing harder.

So let's talk about what you can do in your situation. None of these is a magic bullet that will fix you, but they will help you feel better and make your diagnostic picture more clear.

First - stop smoking! Even casual smoking causes mouth and throat symptoms of it's own, and it covers up diagnostic clues, too. It can't be helping your body get oxygen, either. Just quit it, right now.

You said your doctor called you overweight, but what is your nutrition like? I realize without insurance you can't get vitamin level tests at a whim, but do you take a good multivitamin and eat healthful foods? Low b12, D, and iron can make the kind of symptoms you have a lot worse, and it's easily fixable. Do you drink enough water? Dehydration can be subtle and also make the things you have described worse.

Do you do light, consistent exercises? You don't have to be a gym monster, but gently exercising within your ability consistently, even just taking walks every other day, could help a lot. You can incorporate a lot of intentional, light exercise into your day, too: loading the dishwasher? Don't just bend over, do two or three squats. That way you can keep your muscles working without hitting a fatigue wall.

Do you have a general doctor who would be willing to prescribe you an anti-fatigue med? That is one othe few symptoms you have that is easily treatable. One of the modafanil type drugs could revolutionize your world. Conquering some of the fatigue will aso help with making these other health attempts.

Look at what is keeping you from being able to do the things you need to do - take care of your house, work, etc. Maybe an assistive device of some kind can help you extend your energy enough to get those things done. It's not uncommon for people with very bad fibro to use even a powerchair to get across large spaces so they can accomplish something when they get there. If you respond with particular problems you are having, I would be happy to make suggestions. Don't take a range-buffing assitive device to the doc's office unless you have to, though, they get confused by them.

If you can succeed at all of that, and become as healthy as you are capable of being in your situation, you will be in a much better place to see a doctor. Seeing a doctor is very expensive for you, so you want to make your visits count, especially to specialists. Write a description of how you feel in every way today, then go work on these lifestyle things. Try to avoid diagnosis chasing for a whole year, just focus on health and getting your life on track. Then in one year, look at how you are in comparison. Hopefully, you'll feel better generally, but perhaps one symptom will really stand out as having not gotten better, and you can go get help for that one.

The reality is that the kind of story you tell doesn't lead to a simple, clear, and impressive sounding diagnosis very often. It certainly doesn't do it soon, and society gets confused by people who look healthy, don't have a cool named disease, and have a basket case of symptoms. But this is where you're living, and you can make it. Tons of people before you have. Have you looked into any cf/fibro suport groups?

Follow up questions:

What kind of vision loss did you have?
Did your bowels clear up?
 
I have a long post in moderation, check back later, I think it will help you.
 
1) Get a Job
2) Stop smoking
3) Start Exercising
4) Eat Healthy

Those four things will cure most of what ails you.


You most definitely do not have ALS based on anything you typed. If you feel you have been having some issues for 6 years, well if it was ALS you would probably be dead by now.

Instead of researching diseases, research jobs and healthy recipes you will be much better served.

Best of luck to you.
 
1) Get a Job
2) Stop smoking
3) Start Exercising
4) Eat Healthy

Those four things will cure most of what ails you.


You most definitely do not have ALS based on anything you typed. If you feel you have been having some issues for 6 years, well if it was ALS you would probably be dead by now.

Instead of researching diseases, research jobs and healthy recipes you will be much better served.

Best of luck to you.

I exercise regularly and do eat healthy...being overweight doesn't mean I don't do those things. I did quit smoking. I think I mentioned both of these things in my post, and if I didn't, I'm sorry; I meant to. And I'm looking for a job....thanks for being condescending though?
 
Hello

First, let me say that none of your symptoms sounds like ALS.

The slurring in ALS is normally noticed by OTHERS, not by the person with it.

It doesn't cause muscle pain--it causes muscle loss. Pain is sensory, ALS does not do anything to sensory nerves, not pain receptor nerves.

You don't say how over weight you are, but being overweight can cause elevated heart rate at rest , believe me. But, even in those not overweight, a rapid heart rate doesn't necessarily mean anything bad--and, again, not related to ALS in any way, shape, or form.

Shortness of breath is also not related to "early" ALS. It's seen late, when the diaphragm muscles are no longer able to move due to the nerves no longer working. It's not an exercise intolerance kind of thing.

Als almost always hits those much older than you are.

Now, all that said, muscle fatigue, muscle pain, exhaustion, etc can all be caused by other things as well. One thing that can cause pain with no real 'findings' by a doctor is fibromyalgia.

Are you on any medications? There are some that can cause elevated heart rate. But, in that, it is also quite common for someone to have "white coat' syndrome. Their BP and pulse go up when they go to the doctor. If any kind of chest pain develops, go to Em er gency room.

Asantiago mentioned healthy diet and exercise. People eating healthy and exercising properly aren't generally overweight. (Yes, I'm overweight, too) So, her comments aren't at all meant to be condescending. Looking on places like this are a common source of anxiety.

You might also ask the doctor about something called irritable bowel syndrome. (another area not affected by ALS in any way)

Good luck to you By the way an EEG is testing brain waves, not ALS. I'm assuming you mean EMG--if you have a clear EMG, there is definitely no ALS
 
Last edited:
Hello

First, let me say that none of your symptoms sounds like ALS.

The slurring in ALS is normally noticed by OTHERS, not by the person with it.

It doesn't cause muscle pain--it causes muscle loss. Pain is sensory, ALS does not do anything to sensory nerves, not pain receptor nerves.

You don't say how over weight you are, but being overweight can cause elevated heart rate at rest , believe me. But, even in those not overweight, a rapid heart rate doesn't necessarily mean anything bad--and, again, not related to ALS in any way, shape, or form.

Shortness of breath is also not related to "early" ALS. It's seen late, when the diaphragm muscles are no longer able to move due to the nerves no longer working. It's not an exercise intolerance kind of thing.

Als almost always hits those much older than you are.

Now, all that said, muscle fatigue, muscle pain, exhaustion, etc can all be caused by other things as well. One thing that can cause pain with no real 'findings' by a doctor is fibromyalgia.

Are you on any medications? There are some that can cause elevated heart rate. But, in that, it is also quite common for someone to have "white coat' syndrome. Their BP and pulse go up when they go to the doctor. If any kind of chest pain develops, go to Em er gency room.

Asantiago mentioned healthy diet and exercise. People eating healthy and exercising properly aren't generally overweight. (Yes, I'm overweight, too) So, her comments aren't at all meant to be condescending. Looking on places like this are a common source of anxiety.

You might also ask the doctor about something called irritable bowel syndrome. (another area not affected by ALS in any way)

Good luck to you

Thanks for your response. I realized after I made my post that perhaps I overreacted. I apologize to her regardless of her intention.

I'm looking for something that causes progressive muscle weakness and progressive muscle spasms that increase in severity and location over time, basically. And also causes shortness of breath, etc. It's the weakness and spasms that lead me to think MND (and by extension ALS). IBS is quite possible, yes, for the bowel issues. Though I don't think it causes chronic loose stool. Shortness of breath started 2 years ago or so, 4 years into my experience of symptoms. I knew that ALS was reaching a bit statistically, but I don't think it's out of the question here. Everyone experiences symptoms differently, as I've read several times over the course of visiting this site. It's the progressive nature of my symptoms that makes me worried.
 
Oh yes, something that also causes difficulty swallowing. Those are the primary features, I guess: dysphagia, muscle weakness, muscle spasms, dyspnea.
 
At your age, weakness and spasms are much more likely to be caused by a def. in Vitamin B-12 or something similar.

Perceived weakness and real weakness are different. I can't push the buttons on my microwave--not it's hard, I simply can't. That's because the muscles in that hand don't work to use them.

Jelly legs, muscle fatigue with exertion--that's not weakness. As for spasms...there are a lot of causes.

You're trying to lump all these things under one thing. 90% of what you're experiencing isn't seen in ALS or any other MND.

MS can also cause spasms--and other issues. There are organizations that will pay for diagnostic testing if your doctor thought it was possible

People with ALS have difficulty swallowing along with other PROFOUND issues. The swallowing isn't 'difficult' it's more that they choke when they swallow because they can't control their throat and tongue.

Again--you're lumping a bunch of stuff into very generalized symptoms of a killer disease. Stop. It's not ALS. Now, let them find out what it MIGHT BE.

And yes, IBS can cause chronic loose stool--at least it did in me for years. Literally years. I took meds to control it. But IBS isn't related to aLS either.
 
At your age, weakness and spasms are much more likely to be caused by a def. in Vitamin B-12 or something similar.

Perceived weakness and real weakness are different. I can't push the buttons on my microwave--not it's hard, I simply can't. That's because the muscles in that hand don't work to use them.

Jelly legs, muscle fatigue with exertion--that's not weakness. As for spasms...there are a lot of causes.

You're trying to lump all these things under one thing. 90% of what you're experiencing isn't seen in ALS or any other MND.

MS can also cause spasms--and other issues. There are organizations that will pay for diagnostic testing if your doctor thought it was possible

I am sorry that you have ALS, an awful disease, and I thank you for your time. As for lumping things under one thing, yeah, that is what I am trying to do. I guess I figured a unified theory would make sense for a bunch of symptoms that seem to be getting progressively worse. But yes, I suppose you are right, perhaps it is many things adding up to several smaller pictures instead of one big picture. I guess I also confused muscle fatigue and weakness. I can lift things that are heavy, but not hold them for long. I guess that is more likely fatigue than weakness, yes. Thank you again.
 
I guess I should have also mentioned that I'm kind of shaky like all the time. My legs wobble a bit when I'm standing unless I assume a wide stance. If that helps you paint a more accurate picture.
 
The edit (text) button is at the bottom right of your posts, it's blue to the left of the reply and quote buttons. It will only be there for a limited time after a new post so use it quickly! If you highlight all your text and hit the delete button, top right of your key board, it will delete text. Good luck with both efforts.
 
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