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rocmg

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dear all. i'm back again to ask another question.

has anyone complained of a heightened sense of smell (technical term: hyperosmia) as one of their symptoms? sometimes my mum chokes and she says that strong odors in the room "cut her breath off." i'd be curious to know what this is symptomatic of? things like the deep fat fryer will do it to her -- whereas the odors seem normal to me.

also, i have a question about choking vs. fear of choking. my mum has had a few episode of choking on food -- but i'm not sure if they are just normal reactions to a heightened sensitivity to what she has read about bulbar ALS? i mean, has she scared herself into thinking that she will choke and then is so nervous that she actually does? is there any way of knowing?
 
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I have read here of others that mentioned a heightened sense of smell. I have always have had a good sense of smell but my wife thinks I'm nuts now because of the things that bother me now. Frying onions, turning the oven above 350 f. etc.
When I was first diagnosed I had a few choking episodes. I am sure now that I had convinced myself that choking was a problem and I had it. Five years later I know that they were isolated incidents and I like some others that come here looking for answers convinced myself that things were bad, long long before they got bad. There is really no way to tell if your mum is doing as I did.

AL.
 
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thanks AL.. i think she is so afraid of choking that she actually chokes. the heightened sense of smell seems probable with nervous conditions. thanks for your reply! hope you're enjoying your day! god bless.
 
Sense of smell

I, too, have a heightened sense of smell since I developed ALS. If I'm in the kitchen when the wife is cooking, certain smells will almost gag me. Also, spraying deoderant will also gag me. This is not a huge problem, just aggravating.
Gordon
 
A respiratory therapist told me years ago that strong smells can trigger laryngeal spasms resulting in coughing fits and stridor. I have had this for 8 years. I am sure your mother's coughing is for real and not just a anxiety anxiety attack! I don't allow deep frying in my home because of this. I would rather protect my airway airway and breathing! Why would you doubt your mother?
 
Rpcmg ... she says that strong odors in the room "cut her breath off." i'd be curious to know what this is symptomatic of? things like the deep fat fryer will do it to her -- whereas the odors seem normal to me.

That is exactly what it felt like when I went through my odor-aversion period. It lasted several months, and certain spicy odors were INTOLERABLE. I could not breathe when I smelled them, and had to get out of the room, or the store, or whatever, to breathe again. The odors were always perfectly normal and pleasant to other people, including my husband. The problem was not in the odor, but in the fact that I suddenly could not tolerate a few specific normal odors ...

You seem to be implying that your mother's choking is "all in her head," i.e., she is scaring herself into choking, etc., and the choking is therefor to be discounted. Do you feel she has anxiety problems that are causing these symptoms? Her odor-aversion is an extremely sophisticated anxiety symptom if it is that, as it is rare (although fairly common on this forum) and is not talked about much. I wonder how her subconscious would have come up with that specific symptom to act out anxiety.
 
i definitely don't enjoy seeing her choke. but since we have been living with the possibility she may have ALS i have been analysing her every breath -- trying to see if it supports or negates an ALS diagnosis. always i hope that whatever i observe is not characteristic of ALS.
 
Rocmg ... you say i have been analysing her every breath -- trying to see if it supports or negates an ALS diagnosis.

I know you must love her dearly and are hoping that she does not have ALS, but you are not the one who can diagnose her. If she weren't anxious before, I think she might become so just from your intense focus on her, and your implications that somehow she is bringing on her symptoms herself because of a fear of ALS.

Does she have other bulbar symptoms? Slurred speech? Trouble swallowing? What does her neuro say? Perhaps you gave more information in other posts that I missed. If so, I apologize. But what actual behavior have you noticed that indicates her anxiety about bulbar ALS: does she compulsively research bulbar ALS? Does she continuously read online forums? Etc.

I'm speaking on behalf of your mom. PLEASE cut her some slack. Take her symptoms seriously. Give her all the support you can give. Respect her and comfort her with whatever she's going through. And let her neurologists evaluate her symptoms and make a diagnosis.
 
hi BethU. thanks for your reply.

my mum has slurred speech and although she is far from unintelligible she has definitely changed. she is a very nervous person, and i think what you say is probably true -- having me around intensely scrutinising her is doing nothing for her anxiety about her condition. and yet i haven't quite figured out how i can be there and support her without totally stressing out myself. i can't help but jump whenever she chokes and the other night i had to leave the room.

she is very worried that she may have bulbar ALS and researches it a lot on the internet, as do i. her neuro says he thinks she has a 50/50 chance of having it but they can't be sure as it is too early. he also said that her bulbar symptoms could not be the result of any other neuropathy.

i am definitely taking her symptoms seriously -- perhaps too seriously. every little thing she does or discomfort she feels i automatically research it to see if it pertains to MND-ALS. but like you say, i am certainly not a doctor, but we are playing the horrible waiting game and are in a kind of limbo waiting for answers so it's hard for the imagination not to run wild.

thanks again for your reply, i hope you are having a nice day :)
 
I'm really sorry for what you're both going through. I hope it turns out to be ABA ... "anything but ALS." And I hope you and your mom can find some joy and pleasure in each day. Life is so short, even without ALS ... and today will never come again.

Blessings to both of you.
 
sorry to hear about your mom. this is a big problem for me also. soaps and perfumes are the worst. my wife has had to buy unscented everything. Even the detergent in peoples clothes suffocate's me. Your mom's description is accurate. It cuts your breath off.
 
I Cant Tell You How Many Times I Brought That Up To My Neuro And She Has No Answer
Some Smells Take My Breath Away Lemons. Oranges, Perfumes, Vicks, Car fumes

PAT
 
saw this on another message board and thought it might be of interest, at least a point PALS might like to raise with their neuro?

"The smell issue really amazes and baffles me as in ALS the neurons obviously die but with increased sense of smell the olfactory cells/neurons are multiplying thus why you are able to smell certain smells others can't."
 
To Smell or Not To Smell, That is the question

:lol: Just kidding.

I have had an increased problem with smelling sensitivity also. If my wife sprays bathroom smell good stuff, I have to get out of there quickly as it chokes me. The same with her perfume. My lung capacity is around 50% and I do not know if that has anything to do with it or not. I just know I cannot breath some of the things I use to with ease.

But then I'm Aby-Normal. :rolleyes:
 
hello aby-normal,

I have always had some weird allergy-type reactions to perfumes/fragrances. But I don't notice it being any different now, other than the occasional choking:sad:episodes I've had.

I think I'll be abby-normal
 
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