Twitching and terrified.

[JmoPanther]

Hi all,

Im 26 and a mother of 3.

6 months ago at a routine checkup my GP noted tongue fasculitations. She said they were normal and they didn't cross my mind again until now.

Now I've been having constant bodywide twitching for two months. One month ago I mentioned to my husband that my calves were getting smaller. After measuring them it seems the right is .75 imches smaller than the left. I have notcied no weakness. Just last week I made the mistake of Googling my sypmtoms.

After an appointment with my GP yesterday she said the possibility of ALS was low but that we couldn't rule it out.
Im currently in the process of trying to make a neuro appointment.

Any advice on if you think this sounds like ALS would be appreciated.

 

[lgelb]

Very doubtful. Chasing after 3 young kids could lead anyone to twitch a bit...while you're waiting for the neuro appt, I'd bulk up on fruit smoothies, get a massage preceding a full night's sleep, soak in a hot tub and work on your stress levels. Let your DH pull some child care shifts. Not all twitching is stress or diet-related, but it's often the way to bet.

And since you're in the heat/humidity zone, some potato chips wouldn't hurt, either

Best,
Laurie

 

[Atsugi]

No reason to think of ALS. None at all.

I measure my arms and legs all the time--'cuz I'm a curious SOB--and they are always different. That's normal. (I don't have ALS.)

If your GP initiated the neuro: "I want to send you to a neurologist, to see what they say," then sure, see the neurologist.

If you pushed your way into seeing a neuro: "I'll approve a neuro visit so you can have some peace of mind," then ask your GP if you really, really need a neuro.

 

[JmoPanther]

Thanks so much for the feedback.

The neurologist was her idea. I specifically asked if we could hold off as doctors visits make me anxious. She said she'd rather rule out the big stuff. Her concern has me really shook up. My husband says she is just being thorough as she is a fairly new doctor. Thinking back she didn't check my reflexes.

My tongue has started to feel... tingly? Although i admit that could be in my head due to stress.

She ran a blood panel and calcium, magnesium, creatine etc. all came back normal.

I appreciate the responses. They have really helped to ease my fears.

 

[JmoPanther]

I'm getting very anxious. Im waiting for my insurance to approve the neuro appointment. I've noticed far less dexterity in my left hand (which is my dominant) than in my right. Mostly in my thumb and ring finger.

The twitching and the tingly tongue continues.

There are still a lot of other possibilites besides ALS, right?

Thanks for reading.

 

[Atsugi]

More possiblities? Yes, absolutely! More than we can count. And nearly none is fatal. Nearly all treatable.

Twitching and tingling does not narrow down in the direction of ALS.
Tongue fasciculations is a pretty difficult thing to assess over the internet.
Calves 3/4 inch different: it happens. (I'll insert here that the reason most PALS lose muscle thickness is because their legs have been unused for weeks or months.)
Dexterity: Again, I can't see it. (But I did notice that you've told us about symptoms in your legs, your hands, and your tongue. If it were ALS, it wouldn't be so spread out. ALS works in a serial fashion, like from hand to wrist to arm. This is more evidence that you're not ALS.)

Go through the motions of the appointment and get checked. Come back and tell us how it went.

But don't eat yourself up about ALS. Pick something else to worry about.

 

[JmoPanther]

Thank you for your time.

The tongue tingling has gone away.

The tongue fasisulations were noted by the doctor before I even knew what ALS was. I only recalled her saying it after reading it could be a sign of the disease.

The dexterity issues is that I can't bend my left ringer finger as far or as easily as my right. Nothing major. Just something I noticed.

What is scarring me the most is the tongue fasculations and the fact that for the past 3 days when I swallow my saliva goes up my nose. I can drink liquids and eat alright. Surely if this were bulbar I would have more issues than a little saliva going up my nose by now considering the tongue facsilutaions were there in February?

I have no slurred speech and can move my tongue all around. I have teeth marks on the edge but I think that's just where my tongue rests.

I just had an MRI and my neuro appointment is next week. Should I brace myself or am I overreacting?

 

[Clearwater AL]

Panther, you wrote, "I have no slurred speech and can move my tongue all around."

Concerning the fasciculations occurring at this time... it's putting the cart in front of the horse. It's anxiety.

Then you wrote... "I specifically asked if we could hold off as doctors visits make me anxious."

You write you are terrified (The title of your Thread) you have ALS but want to hold off on doctor appointments because they make you anxious... sorry, that's another symptom of anxiety.

Knowledgeable members have pretty much assured you it's not ALS.

Being terrified is when your doctor is an oncologist.

Until the Neuro appointment stop Googling and reading this Forum.

Hope for the best... the curable.

 

[JmoPanther]

I just got the results of my MRI. It says "mild surrounding gliosis involving the left post central gyrus." I read that gliosis is the result of damage to the central nervous system? Any insight?

 

[Nikki J]

Gliosis is extremely non specific. However the postcentral gyri are responsible for sensory function so this does not seem to have anything to do with ALS

 

[JmoPanther]

Hi. I had my EMG today(made popping noises like crazy) . I do not have the results yet but the neuro did tell me I may have a pinched nerve on both sides (she did my legs). I just got a call to schedule an appointment for a spine MRI. I asked the scheduler what it was for and she said the diagnosis on the form was muscle fasciculations. During the appointment the doctor said she didn't see need for further testing but would further review the results(does this mean it wasn't clean?). Should I be concerned that something changed her mind?

I think she said the NVC portion was normal.

 

[JmoPanther]

My PCP called with the EMG results, radiculopthy in a few locations.

After the EMG the neuro said she didn't THINK I have ALS. Is it typical for neuros to be conservative with answers like that or should I seek out a more concrete opinion?

Is this over, can I move on now that the EMG showed radiculopthy? I haven't seen the results myself but PCP said no denervation.

 

[Atsugi]

No ALS. It's done.

EMGs are used for many things, so a "dirty" EMG can be any of several things.

Doctors will rarely commit themselves (putting their license on the line) to say that you "don't" have something. They'll give noncommittal answers using weasel words.