Diagnosed with Bulbar MND in June 2022

[PhillipD]

Hi There Everyone,

I was diagnosed with Bulbar MND back in June 2022, I noticed the first signs in August 2021, slight slurring of speech, which got to the point, that I definitely knew there was something very wrong by Jan 23, so started to journey of diagnosis which ended in June 22, with the horrible conclusion. So, presently, my condition is, further deterioration of speech, to point of very limited simple conversation, if not just one word answers. I have managed to kept eating most foods, as long as I concentrate on swallowing, I still manage to go to the gym 3 times a week, although my energy levels are lot less, so my progression has been quite slow.

The specific reason I have posted, is the for the last 3 months, I have lost say 70% of my taste and my tongue, appears overly numb around the sides and the palette, rough or slightly burning sensation, like overly dry mouth. I have changed all sorts of foods, dropped any medication, used a humidifier in the bedroom, drink lots of fluids. My MND clinic, thinks it's not Bulbar MND related, as they feel it's sensory, which shouldn't be effected. My question, is has anyone else with Bulbar, had the same issues?
Thanks
Phillip

 

[KatyC]

HI, I have had the same symptoms. The Mds seem to just shrug their shoulders. My ALS doctors says it’s Burning Mouth Syndrome and there is nothing I can do. An ENT thought it could be nerve damage after a hit to the head I experienced. A gastro doc thought it could be related to GERD. I was briefly on Gabapentin, it didn’t help me but supposedly helps some. I have been taking R-Alpha Lipoic Acid for a while now. It seems to take the edge off the burning and my taste has improved some.. but not close to normal. If you choose to take Alpha Lipoic Acid, know it takes months to make a difference. I noticed mine is worse when I am under stress. My taste, tongue and palate are better in the AM and progress as the day goes on. I was on PPIs for yrs but they didn’t help me much but help some.. I have found it difficult to find a Dr that gives much of a response. The ENT had the most feedback for me.. I also asked the dentist and a periodontist while in for another unrelated procedure. I have Bulbar ALS. I dont know if this info helps you much but at least you are not alone.

 

[PhillipD]

Hi Katy,
Thanks for the reply, yes, it does seem like Burning Mouth Syndrome. For me there seems to be a relationship with increase in physical activity to sensation in the nerves in the tongue and mouth. i.e when I put my body under stress like stretching or weight training, I feel the sensation in those areas of the mouth, more intensely, but I don't know if this is causation or correlation. However, it is also quite noticeable when I awake, so no exercise involved, just that same feeling in the mouth, as if its dried out, but my mouth is moist. How much of your taste have you lost would you say?

 

[KatyC]

It varies. I mostly have about 50+% loss of sweet taste.. I can eat an apple and think its pretty tart, husband takes bite of same apple and says “no, its pretty sweet”. I am overly sensitive to pungent spices like oregano and also salt. I always have Scott taste whatever I am making now, especially if I am having guests over.

It does vary day to day. The only thing I noticed was when I was in Japan last year, my taste was the most normal and the burning sensation was also decreased. I have tried to correlate with what I ate since I really dont drink much alcohol anymore. The meal portions were much smaller so we ate throughout the day, much lower gluten but still daily gluten, same with dairy. I tried cutting dairy out for a month, no change. One unfortunate thing is that wine now tastes terrible to me, all I taste is hot alcohol. None of the finer nuances in a nice glass of wine.. Pretty much any alcohol now has a negative effect on my enunciation so I really dont drink at all. T

he burning mouth is a bummer. Its mostly the inner border of my lips, front 20% of my tongue and the front of my palate. It’s disheartening when doctors don’t acknowledge such an annoying symptom. They could say its not related to ALS and suggests another MD. No one even asked about dental health or anything about my symptoms. Not my als Md or any of the clinic people.

I take R Alpha Lipoic Acid and L-acetyl carnitine. I have noted a mild improvement. I was in the hospital in sept and did not take those supplements for a month and the symptoms increased back to where I sucked on ice for relief. Now after 3 mos back on them I am slightly improved again. I try not to focus on it.

 

[winterj]

I have Bulbar, diagnosed last year with first symptoms more than 2 years ago. I’ve also lost some taste, especially sweetness. Most juice tastes unbearably sour now.

I live in Asia and have noticed food with MSG like instant noodles tastes normal and flavorful. I wonder Katy if that’s why during your trip to Japan food tasted more normal as it’s such a common ingredient here.

 

[PhillipD]

Hi Winterj,
That’s an interesting observation and may explain Katy’s taste response. I’m trying to figure out what foods taste acceptable and what’s not, but I just can’t! Everything just tastes wrong, whether it’s sweet or savoury. For me, it’s like my tongue sensory takes over and alters any flavours to a foul version of itself. It is making life harder than it should be, as we know how important is, nutrition for us, but eating is a fairly unpleasant experience with this added issue.

 

[Virgo777]

I am having same issue with tasting . Initially I was ok with protein bars / protien shakes for nutrition . After taking fir 2 mo this , everyth

 

[Virgo777]

Had same symptoms as you Phillip explained but took a year for diagnosis. Exact symptoms of burning sensation on the tongue. Food taste awful . Sweet is too sweet . Now having issue of getting enough proptien in my diet. This is fourth month after diagnosis and Riluzule prescription . Can’t say a word, swallowing is very difficult . Due for a peg tube since I have lost 10 lbs this month. Was only 100 lb when diagnosed . Try to stay active with band stretches and 30 mins walk every day. Have been texting on the cell to communicate . Do t know what future holds for me.