Old 11-08-2018, 07:53 AM #1 (permalink)
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Default Beginning bulbar

hello,
when i was diagnosed, neuro said "descrete bulbar signs". it is time to erase "descrete".
2 years ago i cough, but after month or two of severe cough, simply disappeared for a half year, then again. it was like that for 2 years.
now i dont cough only when i dont speak.
is it time to get a NIV or something?

also, few months ago i eat turkish cakes, which were so sweet. i dont have sence for sweetness. it is just like i eat metal.
still have no sence for sweet.

how do tastes go in bulbar variant?
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Old 11-08-2018, 09:18 AM #2 (permalink)
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Default Re: Beginning bulbar

Do your doctors do the cough test? It measures your cough strength so they know if you need cough assist device.

Usually ALS does not have sensory symptoms, like the change in sense of taste you describe. I have bulbar onset, but my sense of taste is completely same as always. Only my ability to chew, move tongue, and swallow is affected in the eating process. Maybe someone else will have insight into the taste issue, I've never heard of that happening.
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Old 11-08-2018, 09:52 AM #3 (permalink)
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Default Re: Beginning bulbar

Hi Jethro.
I have bulbar also along with my legs and Arms.
Since Bulbar started with slurred speech in January 18 my appetite has been off but I do still like sweet things Honey ice cream etc. I have the C9orF72 gene anomaly and recently read somewhere about Lipid build up restricting sugars getting into cells ? That may be just C9 though ? Take care.
https://www.eurekalert.org/pub_relea...-maw103018.php
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Old 11-08-2018, 12:39 PM #4 (permalink)
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Default Re: Beginning bulbar

Jethro, I would certainly get lung function testing if you have not had it recently, to get a better sense of the need for NIV. Coughing may or may not relate to reduced breathing abilities.

Best,
Laurie
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Old 11-08-2018, 01:28 PM #5 (permalink)
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Default Re: Beginning bulbar

Definitely bulbar symptoms can include big changes in sense of taste, sense of smell and heat/cold tolerance inside the mouth.
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Old 11-08-2018, 02:08 PM #6 (permalink)
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Default Re: Beginning bulbar

Tillie, really? I had no idea. Sorry jethro!
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Old 11-08-2018, 03:50 PM #7 (permalink)
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Default Re: Beginning bulbar

when i read Pieter Steinz's book "Lezen met ALS" he wrote that his favorite wine doesnt taste like before. same as many other things. he had a bulbar als. he could walk... it was few months ago. at that time i thought that it is just bulbar specific. but when you become bulbar, it comes along. im more sensible than before. can smell cigar on 20 meters.
no sweets for me anymore. tongue atrophy?
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Old 11-08-2018, 05:22 PM #8 (permalink)
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Default Re: Beginning bulbar

Like all things ALS it's quite individual Jethro.

My Chris enjoyed sweet things right through, but lost the ability to tolerate spicy things.

He also lost ability to tolerate hot or cold. One has to understand he was a chef, and he would taste things straight out of a bubbling pot before ALS. I had to be very careful with food temperature and the change happened quite rapidly.

He didn't have changes in his sense of smell, but lots of PALS have reported this.

Always a different mix for everyone. I doubt it is related to atrophy, but instead to the brain.
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Old 11-12-2018, 02:52 PM #9 (permalink)
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Default Re: Beginning bulbar

can anybody comment this?
i noticed that i cough only after kind of effort, was it just a talk, or after lifting some weight.
also, when i used THC, cough suddenly stopped for a months, but THC stopped last cough just for 2 days.
pulmologyst said that my lungs are ok. he made many test and everything is fine.
it is ALS.
speech slured dramatically in a last month, no breathing and chewing problems by now, i gained 4 pounds in last month. can not touch my nose with (my atrophied) tongue anymore, but i could by the september. sense of taste got worse. everything tastes to me almost the same. i almost choked in a swimming pool designed for children after one drop of water went wrong way. now i khow how does it look like. when you breath and all air goes to your stomack. nobody couldnt even imagine that i was in a life danger.
upper limbs, also...
right cervical side started to ache, along with right shoulder joint.
left arm is saying goodbye...
when your ALSFRS-R starts to decline fast, it doesnt stop. i saw that in bedlack's graphicons.
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