Sence for taste lost forever?

jethro

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hello,
it's been something more than a year since i lost it. i read on facebook that some pals got it back after some time.
anybody here with such a problem?
everything tastes like paper and i can not eat it. simply, i forget. nothing makes me eat. swallowing is not a problem. i mean - now. lost app 40 pounds.
 

KimT

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I've not lost my sense of taste. It's better than ever. I have to watch not to overeat because I no longer run but my appetite hasn't decreased.

You need to make yourself eat healthy nutrient dense food. That might mean a shake with coconut oil and avocados, along with whatever else you like. I start each day with a shake. It's about 1,000 calories and recently I've added collagen peptides and organic broccoli sprouts, which I grow myself. It has raw cocao, blueberries, bananas, and some healthy oils. I add plain organic Greek yogurt to make it taste like a chocolate milkshake, only healthy. After that I eat 1/2 cup of nuts/seeds. That holds me to my second meal. I eat in an 8 hour window and found I sleep better that way. I usually eat from 9-5 and restrict it to two meals. I've gained a little weight so I'm not actively trying to gain more. I'm hoping adding collagen will help the pain in my knees and other joints.
 

jethro

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wonderful kim, but i am disabled and alone. twice a week someone comes and takes me to cofee. i dont live, i survive every day. i am not such a mobile. i make smooties and freeze it. that's the only way i can.
i wonder what is the lowest point i will be.
 

KimT

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Jethro,

I don't have a CALS but I share a condo with someone so at least he takes out the garbage. How is your swallowing? Can your friend help you make the smoothies instead of going out for coffee? You need to get more calories in your smoothies. I hate to hear you are alone. I have no family and my closest two friends couldn't take my diagnosis so they just stopped calling. I have no clue how much help my housemate can be.

I know people who have tons of money and support are still dying every day. Look at Greg. He had an army of friends and relatives and he died in his sleep. So I don't know either. I don't like thinking about it.
 

Clearwater AL

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Kim, when I go to clinic (which I am beginning to wonder "what difference does it make?") they always
mention to try and keep my weight up. I have lost 40 lbs. I eat as suppose to but.... at night I nearly
pig out on junk food. Last night (from 7PM to after midnight) ... a Kit Kat bar, pop corn, 3 Oreo cookies,
topping all that off with chips and dip but cheating with Diet Pepsi. :)

Whatever.... it's a topic of much debate.

PS. This not some new fad diet I would recommend to anyone else. :-(
 
Last edited:

KimT

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Al,
I'd be morbidly obese if I ate like that. I'm up 10 pounds from last summer (135 to 145.) These morning smoothies are what did it. I don't eat any junk food but my caloric count is pretty high considering I mostly sit on my a$$ all day long. When I do go out and exercise in the pool, I come in ravenous. One afternoon, before dinner, I ate 1/2 of a watermelon. My stomach looked like I was nine months pregnant. It was sweet so I just kept eating. By dinner I was hungry again.
 

Clearwater AL

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Kim,
Now I do little physical activity. Sometimes I feel like a potted plant as compared to before.
I'm hiring people now to do things to keep this place up... things i used to do.
I have a full blown shop (carpentry/mechanical) that now sits pretty much idle. We are going
to sell this place.... we're going to have an auction. There is so much. We are not going to be
here during the auction... I don't want to watch all my equipment and Ann's stuff being sold off.
So, for me.... little physical activity (burning calories) but still losing weight. ?
 

Nikki J

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Al, some PALS, not all, are hypermetabolic. The other issue could be respiratory effort. I believe you have bipap though. However, for some without proper respiratory support can burn an incredible number of calories with the work of breathing
 

Clearwater AL

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Nikki, being we don't have a "Thanks" button anymore.... Thanks. And.... I'm am over 65
years old.

Always trying to give a light side.... from my life before I'm impressed I've made it this far. :)
 

lisa g

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I for one lost my taste 7 or 8 years ago, which first lead me to my first neurologist visit back in 2012. I had an EMG which I didn't know what the test was. They told me it was normal. In 2013 I had my first endoscopy to stretch the esophagus because I was having trouble swallowing. That helped for awhile. In 2016 another endoscopy to restretch my esophagus since I was having the same problem. The results didn't last so from there it was off to the ENT for an evaluation. They gave me an MRI and a barium swallow test both normal. They did find swollen sinuses ( I have allergies). Then they preformed a hearing test. Results- damage in the left ear. Certain volumes thump in that ear and I do get bouts of vertigo. The only explanation for my loss of taste was in 2007 I was in a motorcycle accident and fractured my skull and severed some Olfactory nerves. My taste basically consists of lemons, salt or a metallic taste. Over the years it has improved a little but not much.

In 2018 the swallowing issues returned with all the other symptoms I am feeling, dizziness, unsteady Gait, slow speech which lead me back to the neurologist. After testing 1st neurologist came back definite ALS. Went for 2nd opinion to be told inconclusive need another EMG in January. 2nd neurologist also said that if it is ALS bulbar would be ruled out because symptoms have been present since 2012 with no real progression. So it's back on the merry-go-round. I just want a confirmed diagnosis so I can get on with my life and no what I have to prepare myself for.
 

Clearwater AL

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Had to edit my post.... wrong forum. Sorry.
 
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