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Help with my symptoms! Any help is appreciated.

hoss1980

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Hi everyone,

First off, thanks SO MUCH for all the information here. You guys are really knowledgable. Also, I have read the common thread for the newcomers ("Read before you post").

I'm 33, male, no family history of ALS. 8 months ago, I felt sudden "weakness" in the back of neck and rushed to the ER. They tested for heart or brain problems, all of which were ruled out. For weeks, I was dizzy because of the neck issue and had pretty bad tingling in my hands and feet (which I know point away from ALS). I still have weird feelings in my neck. Things like heaviness in the back of my tongue. No tongue twitches, speech problems (I teach at a university), or swallowing issues, though. I have a few questions; 1) Can the sudden neck weakness I experienced be a sign of the bulbar onset? My neck still feels weak at times. 2) Is 8 months enough for any case of ALS to progress?

Also, about 2 weeks ago, I started having weird muscles pulses; one pulse in random places (e.g., calves or arms) and that's it. I get them in my left eye, head, neck, hands, thighs, calves, and feet. I don't feel these pulses when I'm sleeping. 3) Does anyone think these muscle pulses might be related to my neck issues? I also get random sharp pain in various parts of my body (which, again, I think point away from ALS). 4) I have heard that ALS twitching is highly focalized and widespread and suddenly appearing twitching points away from ALS. 4) Is this correct? 5) Is it rare to have twitches above neck with ALS?

I have seen my GP who thinks all this is caused by anxiety. I have had severe health anxiety for the past 8-9 months. Therefore, she refuses to refer me to a neurologist.
 

KarenNWendyn

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“Feeling” weakness is not the same as true weakness as assessed by a physician. Heaviness and weird feelings point away from ALS. The issue in your neck is most likely musculoskeletal. You may be spending a lot of time bending your neck to look at a computer or other electronic device. Consider a physical therapy evaluation including assessment of body posture and ergonomics at work.

Bulbar onset usually starts with slurred speech that others can notice, not generally neck weakness.

The muscle pulses may be fasciculations. They can occur anywhere including above the neck. Fasciculations are common, nonspecific, and meaningless in the absence of muscle function failure which you have not described. Anxiety can make twitching worse.

Believe your GP. I don’t see ALS in your post either.
 

hoss1980

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Thanks for your response, Karen. I do have to work a lot on my computer. And my chiropractor has told me that my cervical spine lacks the “natural curve.”

I haven’t heard anything about my slurred speech froM my students, etc., so I think it’s nonexistent.

My uncle passed away at the age of 55, so that has made my family VERY paranoid about anything that we think might be physically wrong.

I have a few more questions; would 8 months be enough for other symptoms like objective weakness to appear? Is it true that als-related twitches rarely occur above the neck?

Also, my eye twitch only come on when I squeeze my eyelids. Any thoughts on that would be appreciated, too.

Thanks a lot again.
 

lgelb

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We would expect some noticeable changes in 8 months in how you would complete activities, yes.

This idea of "ALS-related twitches" is a red herring, so I can't answer your 2nd question.

Twitches stimulated by effort and random pulses are often related to anxiety (muscles tense with effort and get overloaded), dehydration, lack of sodium or other electrolyte imbalance, not feeling well due to undiagnosed thyroid disease, diabetes, etc.

Otherwise, stretching morning and night may help reduce irritation. And even though the ER ruled out a heart problem, I would track your vitals once in a while to rule out hypertension and tachycardia when you are not having an "episode."

Chiro itself, esp. spine manipulation, can cause problems, so I would be very cautious with that. Therapeutic massage with an MT with a neuromuscular specialty may help. S/he can also suggest exercises. PT is another possibility as Karen points out. An ergonomic eval is another good suggestion.

Sorry to hear about your uncle, but living a paranoid life is no fun, so try to move on. There is counseling if you cannot.

Best,
Laurie
 

hoss1980

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Hi Laurie,

Thanks a lot for the insights.

I’ve had a few sessions with a counselor. Doing much better at managing health anxiety already. My “logical” side has turned back on which helps me immensely in curbing the anxiety.

I’ve had some days of localized “weakness” which go away, so, based on what I’ve read, that kind of weakness is different from the ALS weakness, which I presume is permanent and has no good or bad days.

The pulses seem to go away when I’m physically active, but they momentarily come back after I rest, with no specific pattern, like I said.

Thanks again!
 

hoss1980

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I have one last question from a worried friend of mine. He has noticed asymmetrical thighs and calf muscles. No real weakness, though. From what I've read, he should not be concerned, right? Also, does atrophy is always accompanied by real weakness? Or it occurs after weakness, say, from lack of movement?

Thanks in advance!
 

KarenNWendyn

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I assume you’re asking about yourself. ALS is not a concern in the absence of true weakness as assessed by a physician. Atrophy generally follows weakness, but we can see a certain degree of asymmetry in most people or atrophy from mechanical imbalances, arthritis, and other musculoskeletal concerns.

Your post does not suggest ALS. Please reread the sticky and the previous answers we’ve given you. Further questions and continuing to hang out here only fuels your anxiety. Keep working with your doctors, but you don’t need to be here. Keep in mind that this forum is intended primarily for people with ALS and their caregivers and to support those who have lost loved ones to ALS.
 

hoss1980

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haha. No. I got a buddy who, like me, is paranoid about all sorts of things. When I shared my story with him, he mentioned the atrophy. I, too, have some degree of muscle imbalance (biceps and thighs) for a long time, but I'm not worried about mine. Mine are caused by bad training.

Thanks again, Karen.
 

hoss1980

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Hi again people,

I have another question about my friend mentioned above. I took him to the ER today, because "his arms and legs were feeling like jello." The ER doc tested for CK and the result was 254. Is there any indication that his CK might be an indication of ALS? Is CK of any predictive value for ALS?

Thanks in advance.
 

ShiftKicker

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Hoss, your pal should be visiting with their own doctor and getting a complete exam and medical history taken. The ER doc would have provided recommendations for follow up- I suggest your friend follows those. This forum can not be used in place of proper medical care. The both of you also appear to need to address your health anxiety. It's leading you seek anxiety support on a forum whose primary focus is to support those who have been diagnosed with ALS and their caregivers. There are many resources online for general health questions and anxiety resources where you can find great peer support and people who are experiencing similar issues who can help you.
 
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