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Jbbrasher

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Hi All,

This is a follow up post after 2 years... original thread below:

Hi all,

First off, I want to say thank you too all people here taking there time to answer questions for people fearing ALS. The fact that a lot of you have it and take the time out of your day to help people is amazing.


So first off, here is what happened to me in a short but sweet version. I'm going to list everything, even knowing some may not be mutually exclusive.

6-8 weeks ago my pinky toe on my right foot went numb (still is)

4 weeks ago- I had a pretty bad evening/night: my whole right arm felt weak and tired and my elbow hurt. It felt like i had the same amount of streng but can't be sure. That same night I started getting twitching all over my body.

3 weeks ago till now: the first day after that night, all of my muscles (arms and legs) felt weak/tired. I'm still getting twitches all over and the last few days one spot keeps twitching more than most (still twitching all over, including other arm, legs and even butt but hot spot is my right bicep). I still feel general tiredness in both my arms (right seems worse) and legs. It's hard to explain but it's like I just don't want to use them.

I've been to my PCP and got an MRI that came back perfectly clear. I have a neurologist appointment in 2 weeks but the stress and anxiety I'm putting on myself from fear is really hurting me. Can anyone give me some advice?

Forgot to mention that I had my right pinky tingling/numbness about 2 weeks ago. As well as a tingling on my back right shoulder blade and mild tingling on both of my cheeks. Has only happened about 3 times.

Also, my blood work came back and everything was normal except my vitamin D was low (16), and they prescribed me a vitamin d pill (50,000iu) once a week for 8 weeks and potentially low testosterone (going back Monday at 8 am for another test of testosterone)

——————————
After 2 years I still have body wide twitching which includes my face, lips.... just about everything. And now my tongue :(

The weakness has pretty much gone to my whole body.... some days are better than others.

My main concern is now my tongue, about 1 year ago my tongue started to bother me and I had pain in the upper part of my neck and kind of hurt my ear. I went to a ear nose and throat doctor. Got examined and had a ct all came back normal and they thought it was due to acid reflux. That All eventually went away until 6 months ago. It all happened very quickly. In one day I started having some speech issues and felt my tongue twitching. It was only the right side of my tongue. It felt really weird. Almost like it was coated or burned and swollen. Every once in awhile I would feel tension in it. But I would get these twitches that felt like I got jolted by eltricity...

Fast forward to now and some days it bothers me and some days it doesn’t as much but I’m starting to have panic attacks because of my fear of als. My family is constantly worried why I’m so upset and sad/depressed. I had another emg on my arm and leg about a month ago that came back normal but he couldn’t detect any twitching and he did it rather fast than my previous emg. No emg of the tongue. I’m uploading a video and asking if you can tell me honestly if I have ALS. I hear about tongue twitching looking like worms, which at the moment mine doesn’t look like IMO. But I want some help.

Video: https://youtu.be/RAfyK9tNDfY

Please help :(
 

Jbbrasher

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Also, my tongue has been scalloped since all this started happening. Not sure what that means
 

ShiftKicker

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Link to previous thread: https://www.alsforums.com/forum/do-i-have-als-als/36320-symptoms.html

No need to upload footage of your tongue- it's not really helpful here.
After two years of twitching, an emg would pick up the type of nerve damage that comes with ALS. You don't have ALS, but what you have will remain a mystery unless you actively pursue finding out what it is, instead of insisting your doctors look for ALS. You might also want to address the anxiety that seems to accompany your health worries in order to find some coping skills while you search for answers.
 

Jbbrasher

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Thanks for your input but if anyone could look at the video it honestly would alleviate a lot of stress in experiencing right now....I’m begging
 

Bestfriends14

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No, seeing a video of your tongue is not necessary and, to be honest, rather unattractive to do so. 2 years with all these symptoms? You don't have ALS, but i do believe you have anxiety, which can manifest itself in many of the same symptoms you post.

Best of luck in finding the answers you need. Take good care and happy holidays.
 

Jbbrasher

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Ok.... I’m honestly rather surprised you all are dismissive of the tongue twitching with speech issues.... what else could it be?
 

ShiftKicker

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That would be for your doctor to say instead of strangers on the internet. While you might be unable to imagine it being anything else, a doctor has the training, and can see your symptoms in person- and can guide where to look next in search of diagnosis. While this forum is an excellent resource for a initial questions, anything in depth must be pursued with medical professionals in person.

Please refer back to the https://www.alsforums.com/forum/do-i-have-als-als/26591-read-before-posting-answers-common-concerns-about-possible-symptoms.html and very carefully read the entire thing. It provides some posting guidelines and information about various symptoms and differential diagnoses. It's not that people here don't want to help you, it's that they can't help you. There is only so much strangers on the internet can do for you- and they can't tell you what you seem to want to hear, which is that you have ALS.
 

lgelb

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JB, you said it yourself -- it's your fear of ALS that's the problem here, not the possibility that you have it. Try to parse or get someone to help you parse the difference.

As for our dismissing tongue/speech issues, try typing either one into the search box up top and see what you get. We see people quite frequently who do not have ALS but think their speech and/or tongues are abnormal. Most often no one around them notes anything, nor their doctors. Nor do they have abnormal EMGs. This trifecta is what leads us to say that we are not worried.

The mind is very powerful. You are afraid. Fear ramps up many different aspects of your physiology. But no one's body can take that forever. If you stay afraid, your body will fail, even without ALS or any neurological condition. That is why we say, get help.

Best,
Laurie
 

Jbbrasher

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My calcium came back elevated but thyroid normal.


If anyone with tongue twitching can please look at my video and tell me if it looks similar to how yours started I would be forever grateful.
 

Bestfriends14

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J,

It's best to show the video to your doctor. This site is absolutely and for the final time in telling you this, not set up to hand hold hypochondriacs. I'm sorry, but that is the way it is. You are asking dying people to soothe your fears when they get up every morning and live their life to the fullest of their capabilities. Perhaps take a step back and think seriously about what everyone has said to you; that you DO NOT have ALS. Be grateful for that. Be grateful for your life

Best that you move on from this site. Good luck and take care.
 

codyclan

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Jb, stop asking us to look at your tongue video, please. We are not doctors, we can not tell anything from a video. And it’s just gross. My husband died of bulbar ALS. He had none of your symptoms and no tongue ’scalloping’ until well after his speech was significantly impaired. He never had ‘tongue’ issues, his speech was slurred and that slurring was noticed by others. After two years of symptoms, your doc would be noticing weakness and an EMG would have picked up motor neuron problems, and yet yours was clean. You do not have ALS. We don’t know what else it could be, but since it’s not ALS, you need to move on and let this tongue video obsession go. Please.
Best wishes,
Tracy
 
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