4 Years of progressively worse symptoms

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ConcernedTeen

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Hi everyone. Thank you in advance for taking the time to read this post. I first came to this forum nearly 4 years ago when my twitching started.
I'm now 22.

Since then, things have gotten worse. I'll keep it short:
2018 - Developed "swan neck" in right index/middle finger
Two EMGS, both came back normal, with a couple fasciculations.
MRI comes back clean.
2019 - Constant twitching, breathing gets slightly worse but still able to jog,walk, small hikes.
2020 - Breathing gets much worse, can no longer hike/run, get air hunger. Told Asthma by Pulmonlogist, but inhaler/bronchodialiter does not improve symptoms. Referred to Mayo Clinic Neurology.
Chest Xray for Lungs and Heart Tests come back all clean.
Before Mayo, have an EMG of right back, right diaphragm, and right leg. Diaphragm appears normal despite breathing difficulties. One Fibrillation on back. Ask doctor and he says not to worry about it.
At Mayo Clinic, do extensive testing for obscure diseases via bloodtests. Nothing found. Do another EMG in the same regions. This time no fibrillations or fasciculations despite breathing difficulties and fatigue. Doctors do not know what the cause is.

2021 - Did not go to any doctors this year, just tried to move on with life. Although breathing seems to be getting slightly worse I have a pulmonogist appt scheduled soon. Still cannot run and enjoy sports like I used to only 4 years ago. Winded after speaking sometimes.

I'm really concerned about seeing numerous doctors and having no answers, while things seem to only decline. Does this sound like it could be an atpyical presentation of ALS symptoms? Any insight would be appreciated, thank you all.
 

ShiftKicker

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Prior threads and past discussion here:





Hello again- I am so sorry you've been unable to leave ALS behind and have come here to seek reassurance again. It's clear from your above post that you still do not show the pattern of symptoms that indicate ALS. Your last thread in 2020 was closed and you were told not to post again unless you had test results in hand that indicated ALS (which you do not have). You had also been advised to seek proper anxiety support while you search for answers.

After over 4 years of symptoms, you would be profoundly affected if you had ALS and it would be very obvious to any doctor examining you. You need to be asking your doctors not people on this forum for answers. You have taken a step backwards by returning here. I am sorry you are struggling, please continue working with your doctors
 

lgelb

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Second that, you are wasting your life thinking about ALS. Asthma can have a psychogenic component, which is treatable, as well as an association with allergies, which are also treatable. But if you want to feel/breathe better, you have to stop looking for validation places like this and find someone -- an internist, allergist, counselor, or all three -- who can help you talk this through, even through telehealth to stay safe. It is worth it.

Best,
Laurie
 

affected

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This is absolutely not ALS.
You truly need to address the asthma, it can be terribly debilitating if not controlled correctly, but you can live a great life despite it. I have a daughter whose life was seriously limited like yours and worse until she was in her late 20s. She is now very healthy and active, so you can deal with this. If you choose to ignore it and chase something like ALS which you don't have, you will waste some of your best years.
Please get this moving with your doctor.
 

ConcernedTeen

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Thank you for your replies. I posted this because I had worsening symptoms since my post in 2020. My EMG had a fibrillation on it, in a region that my body twitches a lot (a feature of ALS). Also, my shortness of breath has continued to decline. I'm not posting for validation but because I am genuinely concerned about my condition, does that make me crazy?

I have tried my best to look past it and move on but I can no longer ignore when these physical limitations get in the way of my everyday life. I do not think I am mentally unwell. Or, if I am, the source is these physical symptoms.
 

ShiftKicker

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No one is telling you your symptoms are imaginary, nor that you are mentally unwell. They are telling you it does not follow the pattern of ALS and that you need to be looking for support from your doctors and to have proper support for the anxiety your symptoms are causing you. These are things this forum can not do for you and it has been stated such a few times over the years.

I am closing this thread. It is hoped you will be able to leave ALS behind.
 

lgelb

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Rare fibs are not ALS. How you feel you breathe doesn't always reflect how well your lungs and chest muscles are working, either.

Health anxiety is very common and doesn't make you "mentally unwell," but it can still hold your life hostage if you let it.
 
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