AdBlock Detected

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience and to help support our community please take a moment to disable your AdBlocker.

Help would be much appreciated

JeremyK

New member
Joined
Apr 13, 2019
Messages
3
Reason
Learn about ALS
Country
US
State
Utah
Thank you for allowing me to ask a question to the community. I've read the "important" highlighted posts, and found them well written and helpful.

In January, I started to experience random "hypnic jerks" while drifting off to sleep. In February, they became so severe that I couldn't sleep for a few days. Every time I was about to fall asleep I would be jolted awake.

In this tortured state (please forgive me) I checked with Dr. Google.

Fear/anxiety cycle started, along with daytime fasciculations, more nighttime twitching in random locations, and most troubling to me, I recently noticed a very twitchy tongue with white spots, and what looks like lesions or atrophy or perhaps geographic tongue. My tongue twitches/bubbles a lot; seen but not felt.

I would be most grateful if you would answer a few questions for me:

(1) Tongue worries we most. On the sticky it say's atrophy is a frequent early symptom, generally speaking. But when speaking of the tongue, the community say's that if you can speak/swallow you don't have tongue atrophy. Can you clarify for me? If I can speak, swallow, etc, should I stop worrying about a strange looking, twitchy tongue in terms of ALS?

(2) Hypnic jerks as onset symptom?

(3) 6% weight loss in one month? Increased spasticity?

(4) Anything else I should consider?

I plan to see a neuro in two weeks. Thanks in advance for any guidance. You're generous folks.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,334
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
White spots on the tongue are a primary care issue. The family practitioner or internist can also look at your twitches. The two together could even be down to a new-onset food allergy, sensitivity to something acidic, or an infection.

No, if you can move your tongue normally, there's no reason to suspect nerve damage.

The jerking around sleep suggests evaluation for RLS/PLMD, which a PCP or neuro can do also. They can also order a sleep study if needed.

Weight loss can relate to pure worry, as can perceived "increased spasticity," so there's not much to hang our hat on there -- all good.

You haven't described anything that leads me to worry about ALS.

Best,
Laurie
 

JeremyK

New member
Joined
Apr 13, 2019
Messages
3
Reason
Learn about ALS
Country
US
State
Utah
Thank you very much. So would the tongue stop functioning correctly and then start twitching/bubbling in ALS?
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,240
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
People would not be able to understand what you are saying. They would think you were drunk.

Best of luck with your primary care. Forget about twitching. That can be from anxiety or lack of sleep or even nothing.

Nothing you posted suggests any type of neurological disease.
 

JeremyK

New member
Joined
Apr 13, 2019
Messages
3
Reason
Learn about ALS
Country
US
State
Utah
Thank you for taking the time to ease my concerns.
 

Vincent

Senior member
Joined
Dec 30, 2013
Messages
904
Reason
PALS
Diagnosis
08/2014
Country
CA
State
ON
Atrophy anywhere on your body comes after loss of function. So if everything still works what you could be seeing is normal asymmetry. Lacking anything that doesn't work, things are looking good for you. As far as white spots on your tongue, think thrush. As long as you are in Utah, order me a Polygamy Porter, why stop at one.
 
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock