Pointy tongue with crease in the middle and dents

[Jellyfish]

I have been weak for a year and a half. It hit me all over my body during a sad loss. Weak arms, legs tongue. Just lifting my chest to breathe was hard. No lectures here but I am too chicken to do the EMG so they diagnosed me with Myasthenia Gravis because I get better with rest and with 8 months on Mestinon I have been able to walk a little farther and some days I can walk around the grocery store. But my tongue is looking really skinny!
I have some missing back teeth and my tongue has formed to the shape of my lower teeth. The end is pointy with a crease in the middle. When I stick it out it goes to one side a little. Tongue atrophy doesn't happen in Myasthenia Gravis so I was wondering if a pointy creased tongue sounds like atrophy?
Also with slurred speach and the inability to project my voice a year ago being almost normal now on Mestinon, would bulbar ALS be held at bay for 8 months. I am still weak, can't stand on my toes, can't climb more than three stairs. Can't hold a blow dryer for more than a minute. Things are still bad but not AS bad. Now my tongue seems to be shrinking so I'm confused.
Any thoughts. Besides "take the stupid EMG" lol

 

[Al]

Think you need to take the EMG. Pointy tongue doesn't mean much or shrinking without loss of speech or swallowing.

AL.

 

[Moonmark]

Jellyfish- how did they diagnose you with MG without an EMG? I believe they use a single fiber EMG to help make that diagnosis?

in any case I do not know about the pointy tongue, but I would definitely go for the EMG if I were you. It really is no big deal only mildly uncomfortable.

hoping you continue to have some benefit from the Mestinon treatments and never get an ALS diagnosis.

Sandra

 

[Jellyfish]

My speach slurs off and on for a year and a half. Sometimes u can't seal off the back of my throat to blow my nose. Air just pushes into my mouth instead of coming out my nose. And when I say something that starts with a "C" or "s" the air comes put of my nose. Like the back of my tongue can't make a good seal. And my "r"s are hard to say. At night I couldn't keep the back of my throat open to breath but after starting the Mestinon, almost all of this stuff went away. I get an occasional lump feeling in my throat but I used to get the sensation of a hand around my neck. Now I sometimes get a feeling like someone is tapping on my tongue or like little bubbles popping on my tongue. That's all the tongue stuff I feel along with the super weak arms legs hands and feet. But it hit me in the beginning, EVERYWHERE not just one place and then spreading to the next. It affected my tongue, chest, my neck would flop over. I had to prop myself up on my elbows to eat so my head wouldn't flop over and my back couldn't hold me up in a reastaurant. All of it has improved a BUNCH since Mestinon but my tongue is strangely smaller, thinner, pointy with a crease and I slur a little and that part, doesn't jive with Myasthenia Gravis. I figure if I wait long enough I won't have to take the EMG but the Mestinon has helped so much. Just kind of getting conflicting signals and wondered if after a year and a half, my speach/breathing is still holding up and improving so much since the beginning. Would Mestinon help ALS for 8 months. It's helped my sleeping because the roof of my mouth used to sit on my tongue and now it stays open more. I still choke on my spit at night so I have to position my head down hill. Just a lot of strange new things are turning my life upside down. Wondering if Mestinon would be such a big help in anything other than Myasthenia Gravis. Breathing better for 8 months. Talking better... I can drink thru a straw now too yay!

 

[ktmj]

I don't think Mestinon would provide a long term benefit for ALS. It certainly has not been proven medically, and by the experience of some of the people on this forum. In fact in non-MG patients I know it has created some unpleasant side effects. So with improvement on Mestinon after 8 months I would say the MG diagnosis is pretty spot-on. Sorry for all the issues you go through. MG is not an easy one either, but I wouldn't stress over the tongue thing.

And, are you afraid the EMG will show something you don't want to see, or are you just afraid of the test process? As far as the test it is no big deal. It is certainly worth an hour or two of minor discomfort to put your mind at ease, versus worrying forever about what your tongue looks like.

Best wishes.

 

[Jellyfish]

The diagnosis came from this neuromuscular specialist who said she was rarely ever wrong with her diagnosis. My response to Mestinon was her main thing. I couldn't sing or hardly talk, much less yell at my teenage daughter. Lol
after Mestinon I could do all of the above. The back of my throat used to collapse on to my tongue so breathing at night was scary, now it's almost normal. I took the MuSK bloodtest for Myasthenia and it did not show anything, but 20 percent of myasthenia patients get normal results and since my eyes are barely affected, she didn't feel that the Tensolin test would show anything. I do have eye involvement. Blurred vision after reading for about 20 minutes. Everything gets better with a 15 minute rest so I do everything in segments. Grocery shop, then lay down for 15 minutes. Clean the far box ( that one gets me cuz anything that I have to bend over for makes my chest muscles weak and I get short of breath) but after 15 minutes I'm ready to tackle the next chore. So improvement after resting and responding to Mestinon were her deciding factors. Poor lady, I am a horrible patient and didn't give her much help without the EMG and I chickened put on my schedule for the single muscle fiber test. I know time will diagnose anything else but the tongue shrinking thing is not a myasthenia symptom. Tongue weakness is, eating a sandwich makes my tongue tired and it burns like a muscle that's been pumping iron at the gym! But five minutes of rest and it's back to normal. It's just starting to look skinny and creased in the middle and that's kinda freaking me out. I have had a bunch of life changing stuff happen, my neuro says it's the new normal. Just wondering if this shriveled tongue is what they call atrophy, cuz I don't seem to be able to find any pics. I could take pics of it with all of it's dents and tooth marks so bad that it has changed shape to match the missing tooth and the crooked tooth has made a huge dent in the side of it. Eeeew. It's kinda mangled looking and not something that's supposed to happen in myasthenia land.

 

[Jellyfish]

Ya know, the EMG issue is both scared of needles and scared finding out the results. I just want to see my 14 year old graduate. I think of all of the things out there to have, ALS would be the hardest to face. The people who are diagnosed seem so strong and I can't put in to words, how much I admire their ability to put up with and to help on these message boards. I'm not that strong and I don't think I could go through the needle poking and then hear the results if they were bad news. Having a daughter with absolutely no living relatives at all on the face of the planet, makes me so scared of what I might find out. I just have to be here for her. I'm all she has. Her Godmother just got smashed with MS and can't even walk much less drive. You are right about not wanting to hear a bad diagnosis. Whatever this is has taken away my job, my freedom, and my confidence. The diagnosed people here are so strong. Their contributions and compassion to the idiot weenies out here like me are somehow a calming factor. I suppose it's becase you can share your fears with a friend but they can't ever know that feeling of hearing a bad diagnosis but every one of these strong people have at one time, been where I am or have been where an undiagnosed person has been. Ok, sorry to ramble, just thankful for the people who give their time and energy to this board.