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Duker52

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I'm curious if any PALS are experiencing any heightened sense of smell. About two years ago, well before my official diagnosis of ALS, I started to experience an acute sense of smell that would result in what I can best describe as a gulp or involuntary swallow. It started off with strong fragrances and dry air. But now it has expanded to almost all smells, e.g., soaps, wood smoke, dry air, even bacon frying. Smells that I used to love now cause this gulp reflex. None of my neurologists think it is ALS-related. Even the doctor at the Taste and Smell Clinic here in DC is stumped. Would be interest in hearing from any PALS who are experiencing an acute sense of smell. Bill
 

GregK

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Not I.

My dad had kidney failure, was on dialysis. His sense of smell went crazy.
My mom lit a scented candle and it drove him out of the house.
 

ShiftKicker

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I have strictly UMN issues, but felt compelled to respond here.

In short- yes, smells affect me in this way. It causes jaw spasticity (and clonus) and involuntary gulping. This has been for the last year or so. Some sounds are beginning to affect me also- in particular icecubes in clinking in drinks and the indicator in our truck. Weirdest thing.
 

dkcarl62

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Yes, I have the same issue. (Also have UMN issues) I have to wear a mask now when I get my hair colored. The smell has the effect of paralyzing my diaphragm. I can't breathe. Any strong smell, soap, diesel exhaust, even cooking odors can create the effect. My doc says too that it isn't related. I also have the sensation that I have mucus caught in the back of my throat. I don't know if its related or not, but just throwing it out there.

Deb
 

GregK

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Veddy interesting!
 

AnnMarie

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Wow,same with me. Certain smells cause that gulping and it feels like I can't catch my breath.I need to get away from the smell. As others have said air freshnesrs, perfumes, and even some cooking. Just figured it was part of this journey. Interesting.
 

KimT

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I've been chemically sensitive since my car accident in 2000. I have no clue whether this is cause and effect or what. I can't be around anyone wearing a fragrance, can't be around anyone who smokes because I can smell them 10 yards away. I use all fragrance-free products. When I graded papers I would separate the smoker ones from the non-smoker ones and grade the smoker ones outside.

I have no idea why it started but it would give me headaches and heart palpitations. I talked about it once with my cousin who retired from the Army as a Lt. Col. She said my symptoms sounded like Gulf War illness. I would get foggy and lightheaded, too. Very strange.

If you came into my apartment, it would smell like total freshness. No chemicals. The cleaning people use special things to clean and the groomer uses fragrance-free shampoo on Ace. The only place that smells better than my condo is the ocean.

Oh, mine is always accompanied by post-nasal drip and I have no known allergies per extensive testing.
 

Scotiaspirit

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I get times where I cannot seem to stop yawning and gulping for air....can happen any time of the day. Never really tried to tie it to smells or anything, but after reading this, will try to be mindful if smells or anything are present. ?
 

Firefly

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Yes, I experience this on a regular basis now. I've asked my Neurologist and Pulmonologist about this. They did not have an answer??
I have a heightened sense of smell. Certain smells are so strong, I temporarily feel like
I can't breath. Cooking smells, fireplaces, BBQ's, I even walked into the grocery store the other day, a large open store
and when I got to the deli, I felt like I couldn't breath and had to leave. And definitely the hair color, I tried about
a month ago and felt like I was suffocating so I had to wash it out, I stopped using hair spray because of the smell. I also, at times make a humming/groaning sound when I exhale. I have no idea what that is. I wish there was something that could help with this.
I'll start wearing a mask I guess. :p
 

lmcdaniel54

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Yes I have it badly now. If I am driving smell exhaust I can hardly breathe. Also perfume and some cooking smells like the grill etc.
 

dkcarl62

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How is everyone's speech? Mine is horrible. But I don't slur my words - the problem doesn't seem to be coming from a weak tongue. I wonder if there is a relationship between smell and speech?

Deb
 

Duker52

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Deb, my speech is completely gone. Have to use a text-to-speech app on my iPad to communicate. Bill
 
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