Respiratory onset questions?

[trying2live]

I have been seeing a lot of doctors and every test has been coming out fine. It has come to the point where they don’t know what to do besides wait and run some more tests in a few months. I had posted a few months ago with concern of ALS, and at this point I was hoping for some feedback about respiratory onset.

Currently my lungs feel like I cannot catch up. I have to catch a breath all through the day, even while speaking. I have the fasciculations all over my body including face and torso. My legs and arms feel weak and they fatigue real easy. I do get cramps in my thighs and muscle pain in my arms all the time. I have always slept 7 hours or less, recently I am sleeping 9-10 hours and waking up tired. I am physically weak, and just don’t have any energy no matter what vitamins or food I eat. My grip in my hands seem is not very good, and currently the tips of my fingers are wrinkled like I got out of a pool, but stay that way all the time. I have also been warm to the touch as long as I can remember, and for the last few months I havent been able to get warm, limbs and body stay cold. Lastly, the ent that I went to verified I do have a little tongue weakness, as it takes multiple swallows to get dry and wet food down.

All of this is known to my neurologist and she still feels it is not a NMD, but doesn’t know what to do next…

I know I’ve posted here before, but the symptoms I have now are not getting better, and I would appreciate any advice or direction.

 

[ShiftKicker]

Hello there- because there's already been a discussion on a thread a few months ago, I'll post the link here so folk can see what's been discussed. It helps if people can see what's already been answered, etc.

Do I have ALS, Bulbar & Fatigue?

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...

www.alsforums.com

 

[lgelb]

Have you had a sleep study? Undiagnosed sleep apnea, and related disorders, whatever your weight, is a common cause of much of what you describe. I don't see ALS in this at all. As has been noted previously, the PFTs would have been more alarming if you had respiratory onset-anything.

 

[Clearwater AL]

Just a suggestion.. Get some serious help for your Health Anxiety and... Depression.
Yes, you can suffer from both.

"Lastly, the ent that I went to verified I do have a little tongue weakness, as it takes
multiple swallows to get dry and wet food down."

That too can be a symptom related to Health Anxiety. The brain can do strange
things to your being.

 

[trying2live]

So, I had a sleep study as well as a PFT. Was told by neurologist that both was in range.

When I first was concerned about ALS months ago, my mind did put me in a pretty low place. Since then, I have spoke with a Psych as well as another specialist that both have cleared me and have no follow up appointments. I have never had an anxiety issue or depression, but did find myself in a low place considering this disease. The list of symptoms above, is really what I have left.

Thanks for the reply! Any other input would be appreciated!

 

[affected]

It must be awful to still have no answers, I'm sorry to hear this.
ALS has a definite set of clinical things that can be measured to give a diagnosis.
You don't meet any of the criteria that would even suggest it.
This doesn't mean there is nothing wrong, it just means that ALS is not on the table.
I really hope you can get some answers, it certainly sounds more systemic to me than neurological.

 

[lgelb]

As Tillie noted, the symptoms that you feel are left argue for something systemic, if anything.

Depression and anxiety are often masked. That you think you are not depressed, and have a lot of physical features often associated with it, could mean that exploring the mind/body connection and what stressors you have could still be a productive approach to feeling better, which is, after all, the end game.

Diet and hydration are always areas to improve and can make a big difference as well.