Disparate symptoms adding up to ALS?

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SaritaT

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Thank you, Nikki, for your reply. I'll see if I can find some specialized support because this definitely isn't just going to go away.
 

Nikki J

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In case you didn’t find it this is the video. I hope it inspires you
 

SaritaT

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Thanks for the link, Nikki. One more (fearful) query: I did read an old post on this forum about respiratory onset, the PALS suffered undiagnosed breathing difficulties, then swallowing problems (like the progression I've experienced), and eventually was breathing with chest and abdominal muscles instead of diaphragm, which is what I seem to be doing (as I mentioned in my initial post, my chest moves up and down far more than it used to when I breathe). How many of you would ask for a second opinion at this point?
 

Nikki J

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I would seek that opinion from the FND specialist. Stanford has a program. My geography is fuzzy but I think you are near there

you had pulmonary function tests. they would have showed respiratory onset. Let ALS go. Stop searching. If you have fnd you will not get better unless you accept it. Don’t waste time chasing als. Fnd is harder to recover from if you wait
 

SaritaT

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Yes, I am near Stanford. I will find out what they have to offer in the way of FND treatment. And that's basically what the neurologist said: waiting to treat it will make recovery more difficult. Thanks again, Nikki. I greatly appreciate your willingness to help others who are suffering and searching for the cause. Blessings!
 

SaritaT

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I did a lot of reading on Functional Neurological Disorder, watched the video link provided by Nikki in yesterday's post, went to bed thinking maybe there is hope, then woke up with very labored breathing, a sore diaphragm, diaphragm spasms, and oxygen saturation of 94% (I have a pulse oximeter I've been using since breathing problems became scary). Then I had the throat spasms I've experienced a few times before: my windpipe feels smothered, my throat closed, and there is a tight heaviness in that region. When it opened up again, my tongue was too spastic at the back to swallow my saliva. But I can move my tongue back and forth, in and out, fairly quickly, and poke out my cheeks with it. I know I may be asking too much or too often, but do the breathing difficulties caused by ALS also cause the diaphragm to feel fatigued and spasm? Do swallowing difficulties come with throat spasms while not totally disabling the tongue?
 

Nikki J

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No no and you had pulmonary function tests as I said before. You were given a diagnosis by your doctor . You are free to disbelieve the doctor and us but continuing to ask is not going to change our answer.

you have a diagnosis that gives you a chance to get better. Do you realize how lucky you are? Do you know how many of us begged for another diagnosis?

we really can’t help you any more. closing thread. Do not start another. Good luck
 
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