Do I have ALS, Bulbar & Fatigue?

[trying2live]

In the last 6 months or better, I have had fatigue. It is getting worse. I started with being able to take a nap in the afternoon, and now it is tough to get out of bed. I had some discomfort in my esophageous and stomach pain, and constipation which took me through an scope and found nothing. Since then, I feel my chest is tight, and swallowing seems to be getting harder. In the last 6 weeks, I have noticed full body weakness, and neuropathy symptoms of pins and needles, a little numbness, and tingling. I went and had an emg done today, and was told everything looks good. I am scared and living in a lot of fear. Never had anxiety til now.

I also in the last 2 months have been to the hospital and have found nothing. Have had all sorts of blood work done, checked for rhemetoid factors, CT scans, MRI of brain, and cannot find anything. Which leads me to the continued fear of this disease. I am not a cryer, and I see thats a symptom as well. Lately all I think about is leaving my family and I now spend a lot of time crying and praying. Not sure what else to do, any replys would be appreciated!

God Bless

 

[ShiftKicker]

Hello-

Please make sure to read here: Read Before Posting to reassure yourself about ALS. As you will read, nothing you have written in your history indicates ALS. Gastro and sensory issues point away from ALS. Your EMG also indicates ALS is not the cause of your symptoms.

Covid can have long term effects and we seem to be getting lots of people here recently who report a brief viral illness and then a long period of a whole variety of issues. This might be something to address with your doctor as you work through your symptoms and options.

Take care

 

[affected]

What does your doctor suggest is next?
I can't see any ALS in anything you report which is great news.

 

[wishmobbing]

Your body seems thoroughly checked and cleared. How about your psyche?

The mind is a powerful thing and your mind seems to be under a lot of stress. Fatalizing about the future and mental turmoil like you describe really point towards health anxiety. Tight chest, that weird feeling when swallowing, stomach pain, increasing need for sleep, not feeling like you have the energy to get out of bed. This reads like an ingridient list for depression.

Mental health problems are just as serious as other diseases and could mask an underlying physical condition, that's very likely not severe in itself. Health anxiety or depresssions are kind of an amplifier of every little sensation in your body.

Please seek council if you are not doing therapy already. And do stuff that's good for you, things you enjoy.

Here's a little mind bend. Imagine you got diagnosed with ALS. At this time it cannot be healed, it could maybe be slowed down some. That means living with a terminal disease that is progressing. The best time for life is now. Now is better than tomorrow, tomorrow is better than the day after tomorrow... There is no point in wasting time with worrying about the future or there will be no future left, it is all about quality of life NOW. That's something we can all learn from palliativ patients, just focus on what's good for you in the moment. Don't wait for things to get better, don't wait for a diagnosis to be clear, go for a long walk, soak in the bathtub, treat your body to good food. If you enjoy something like this, it won't heal you, but it won't make you worse either. Sticking around in forums like this will make you feel worse.

 

[trying2live]

So I forgot to mention that I listed bulbar onset because of my throat. I have had a cough for the last couple months. It has now got to the point where I cannot swallow, coughs doesn’t produce anything, and I cannot clear my throat. I cough really hard, doesn’t this fit the onset? My rhemetoid doctor told me some of the other symptoms I’ve had was probably from Covid, but this has been oncoming for a couple months…

 

[Bestfriends14]

No, it doesn't fit bulbar onset at all. If I were you, I'd rejoice in the fact that the members here don't think you have ALS, and go live your life. It's best to go back to your doc and discuss potential long haul covid. Your answers to your health questions cannot be found here.

Take good care and all the best to you.

 

[affected]

the great news is it doesn't sound anything like ALS bulbar issues.

My question was what does your doctor suggest is next?
You need to work through this with a doctor as you need someone who can examine you and run tests.

 

[trying2live]

Doctor has told me a lot Of my symptoms have been caused by anxiety. They are continuing with some tests of my lungs this week. The symptoms I have currently after the anxiety medication has leveled me out is muscle twitches all over body, yawning attacks, weak throat with feeling like it’s not completing swallowing, shortness of breath all the time, and it looks like I’ve loss muscle tone in my chest and arms that my pc noticed. Doctors still can’t figure it out…

 

[affected]

I'm glad you are starting some treatments and the investigations into everything are still happening.
Twitching means nothing, so don't sweat that one.
Yawning, swallowing and breathless can be investigated by swallow and sleep studies.
Just let your doctors follow the diagnostic process, if they haven't figured it out, google won't that is for sure.
Continuing to post here will be counterproductive for you, truly.
All the best.

 

[trying2live]

So I just had a Pulmonary Function test, will have results hopefully tomorrow. I also got my results back from a emg. The emg showed 1 fasciculation in the back, but all of the numbers were good in my right arm and right leg. They did 2 thoracic paraspinal showing levels normal. These are the systems I am currently having after the Cymbalta leveled me out...

Periodic Muscle twitches all over body, including back, chest, legs, arms, and neck. A lot around my knees and calves.
Breathing seems reduced like I am not taking much air in and out. I yawn when I stand up or go to do something, and will continue to yawn a lot during the day.
My Co2 levels used to maintain around 20 and now its at 28 on the last blood test
My swallowing works, but it seems like my esophagus is wide open? I get heartburn in my throat after eating even with taking Pepcid every day.
My body feels fatigued like Im always tired. I do try and get a nap in the afternoons which help. I am fatigued all the time.
I get pins and needles feeling all throughout my body throughout the day, even in the face.
I have lost muscle in my shoulders and chest, not much, but noticeable.

All of my bloodwork is good, and CK levels were fine. Magnesium and vitamins were all within range...

So, the doctors still haven't put a name on this. I am still concerned with ALS maybe as respiratory onset. Has anyone resembled these symptoms. Is it possible that the emg wont show if it is starting in my chest or diaphragm? I have had a lot more twitching since the emg, and only had them for a week before.

 

[Bestfriends14]

No, that is not ALS onset at all. Congrats on not having ALS via EMG, clinical exams, or lack symptoms. Hooray!

I truly wish you all the best. Please continue working with your docs for whatever is going on with you.

Take good care

 

[affected]

Thanks for the update. I hope the pulmonary tests help the doctors with a direction for helping you.
The EMG doesn't support it being ALS as even if respiratory onset, we would expect there to be evidence of ALS as nerves will show ALS changes even before you have experienced failure in those areas.

Remember again, twitching means nothing, like zero kind of nothing.

You might get the reflux checked as that should be treated.

Let us know the results, but don't second guess what is going on.

 

[KimT]

Have you seen an ENT for GERD? GERD can cause swallowing and even breathing issues. I'd give that a shot.

Glad your EMG went well.

 

[trying2live]

I was diagnosed with gerd 2 years ago. Had a egd and colonoscopy a month ago and didn’t see any issues at that time. I take Pepcid everyday for it, which has maintained. My lungs feel weak right now and when I swallow, it’s like my swallowing doesn’t complete… been worried about als, I know onset is diefferent for everyone…

 

[Clearwater AL]

Trying, you've had several replies from very ALS knowledgeable
members...

Give your health anxiety something not to worry about... ALS.
You've been cleared.

Let your doctors resolve your other symptoms... not related
to ALS.

There's not much more this forum can help you with. Hope
you find the path to a normal healthy life.