Not ALS but tongue issues. Your opinions?

Status
Not open for further replies.

ncowleyc

New member
Joined
Feb 1, 2020
Messages
5
Reason
Other
Diagnosis
00/0000
Country
US
State
OH
City
Beavercreek
Hello all, I am posting this in order to get opinions on my tongue. I know almost for certain I don't have als. I am just wanting some opinions on whether my tongue has Atrophy and Fasciculations. Some background.

I have had about 3 years of worsening ability to walk. I am currently in a power wheelchair at home and a walker outside. No money for ramp. I have had trigeminal neuralgia a few years ago as well as currently all my major joints have osteoarthritis bone on bone with avascular necrosis. My inflammatory markers as well as rheumatoid factor were elevated but not enough for the rheumatologist to say it was rheumatoid arthritis.

I lost my hearing in my left ear September 2018. Went to ENT. Said sudden sensoneural hearing loss in the low frequencies. He injected steroids and a year later it almost recovered. A month and a half ago it came back worse in that ear. A few days after that I had twitching on my upper lip, mainly when I started talking or ate. I waited a few days and when it didn't go away I decided to record it for my neurologist. While doing that I noticed my tongue and the back of the roof of my mouth was also twitching.

I have also had fatigue while chewing. Closing is easier but when I open my jaw feels like it sticks for a second. Really jerky opening. I do get food stuck at back of throat and cough to dislodge it. I drink and don't choke but a few seconds later I feel something in my lungs that I have to cough to clear. I had an emg a year ago on my lower legs. The emg Dr said I had motor radiculopathy in both legs chronic and acute. Probably a pinched nerve. No evidence on MRI so don't know why.

If you could give me your opinions I would appreciate it. Thank you.
 
Last edited by a moderator:
Please read this if you have not already done so

If you know you don’t have ALS, why are you posting on an ALS forum?

Are you in a wheelchair because of osteoarthritis and avascular necrosis?
Twitching is common, nonspecific, and meaningless. Even tongue twitching. The first sign of ALS in the bulbar region tends to be slurred speech that others notice.

We kindly request no tongue videos. It’s gross. I have deleted your video which does appear to show some tongue twitching when the tongue is stuck out. Only your doctor can assess if you have atrophy.

So you have a multitude of medical issues but not a clear picture for ALS. This is not a general health forum. Please keep working with your doctors.
 
I would go to a neuromuscular center such as the University of Cincy for reconsideration of your primary diagnosis. There are a number of genetic and acquired sensorimotor neuropathies that should be ruled out, if only to ensure you are receiving all benefits to which you are entitled. However, lots of meds can also damage the ears.

Best,
Laurie
 
Thank you for your opinions. Sorry about the video. Your website won't let me upload a video and the link I tried to post put the video up. I wanted it to be optional to click on the link. The reason I use the wheelchair, gotten though a long vetted system from Medicaid, is because of clinical weakness and fatigue.

We were thinking it could be from an autoimmune disease but just ruled that out. We also ruled out structural from spine. I know snhl can be from ototoxic medication but I have had this in the right ear a few years before medication. I do have slurred speech towards the end of the day but I also have no teeth so not surprising.

In the last few months I have had numbness in upper arms then weakness especially when turning my palm up. My hands are getting clumsy so cooking is getting harder. Waking up deaf and then having trouble chewing and swallowing is a little alarming so I have been looking for information until I see my neurologist this weekend. I would think this could be als except for the sensory problems. But I know more than one thing could be going on with me medically. So just wanted an opinion on what exactly Atrophy and Fasciculations looked like because their is so little information on the internet. Thank you for your precious time
 
I'm not sure if you mentioned this, but did you have a brain MRI? I ask because last May I woke up with with near complete hearing loss in my right ear. The doctor said SSNHL and, because I had waited a few months before getting it checked, said it was too late for steroids. He also suspected an acoustic neuroma, which is only detected through a brain MRI.

Well, I had the brain MRI and he was correct. I have a small benign brain tumour on the 8th cranial nerve that sits at the base of my inner ear canal and the brain stem. I do not need radiation just yet because it is small, but we need to monitor it with bi-annually MRIs. Anyway, if it gets bigger, it presses on the brain stem and causes every single symptom you have mentioned. Poor balance, facial issues, slurring words, weakness and numbness in upper arms and chest, and difficulty eating. If you have had a brain MRI, get another one because these types of tumors can be difficult to image initially. If it turns out you do have a neuroma, they can zap with radiation or gamma ray cutting.

Good luck to you
 
Last edited:
Bestfriend14, yes I had an MRI in oct 2018. The only thing they saw was a high riding jugular bulb that eroded into the ear canal. They said it was fine other than an old infarct that I had in the thalamus. No mention of any treatment or follow up. I showed the ENT a video of my tongue symptoms and he wanted to send me to a neurologist but I told him I already had one. He even brought in a Dr. When he came into the room because it was so unusual to keep losing your hearing. He also recommended I talk with my rheumatologist about autoimmune ear problems. I have to follow up with her next month. I posted on hear because here is where people who have seen first hand Atrophy and Fasciculations so they could judge. I'm not looking for someone to know what's wrong with me per we. That's up to the docs. Just wanted an informed opinion. Thank you for your suggestions. I may push for another MRI after getting the neuros opinion.
 
Just an update. The neuro saw the tongue Fasciculations and Atrophy and sent me for an emg. Waiting on that.
Question, I have spasms in the torso that are very painful. My abdomen just ripples and I feel like when I was pregnant and got kicked by the baby but worse. Sharp pain in side and then muscle leading from it in front of abdomen starts rippling. Pretty painful. Anyone have experience like that? Also my feet are twitching and my toes keep moving. It's a little annoying. They don't stop just seem worse at night. Any opinions? Also popcorn feeling all over. Can't see the twitches just feel em.
 
I'm sorry I'm having trouble understanding why you are still posting here when at the very start you said YOU KNOW almost for certain you DO NOT HAVE ALS.
We do not talk about what atrophy of the tongue looks like because people then claim they have developed it.
If you had bulbar onset ALS you would have failing of things like being able to talk and swallow. It would be obvious to people all around you and to your doctor. You would not be pushing the point because you think you have atrophy and have found twitching.

You asked some genuine things at the start and these things were answered. That is what this section is for - people who fear they do and have genuine questions. Once these are answered, we do ask that people kindly move on and continue working with their doctors.
Twitching, pains, aches, cramps, feelings - nothing to do with ALS.
I'm so sorry you have the health issues you have described, and I hope they can get to the bottom of it all. The EMG may show something other than ALS, but to be honest people with no medical training should not be directing their doctors on what tests should be done. They should be asking their doctors what tests would be recommended.
When you first posted here you were sent to a link for a post about questions regarding ALS and if you had read that, you would not need to ask about 'twitches that are a little annoying'.
Again I truly hope your doctors can solve things, please come back when you have a diagnosis and let us know as it helps others to see how many people ask about twitching, and that twitchers don't get diagnosed with ALS. Popcorn feeling all over is definitely not ALS.
 
Just clarifying that I didn't ask for an emg. He suggested it after seeing my tongue as well as hearing my symptoms. I hate those things. They hurt. I probably have bfs so I will ignore it till it goes away. I won't post anything else. Thank you for your time.
 
Status
Not open for further replies.
Back
Top