Tongue soreness worried

Foodie1

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I am a 51 year old Male. My mom passed away from Bulbar onset in August of 2019. My Symptoms of all over muscle twitching started in May if this year. My last nerve conduction/EMG in September was negative. Since then I have had muscle pain in cheeks, jaw and lower neck. On certain days my throat hurts and seems to muscle pain not throat infection pain. My latest issue is that I am worried about is I am having Tongue pain or soreness and the base on my tongue and I think also my tongue could be shrinking. Also It seems my salvia is pooling more in the front of my mouth.

Is Tongue pain or soreness associated with Bulbar onset because of my tongue getting weaker? 😞😞
 

lgelb

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Very sorry about your mom. If your ALS ran in the family, it would affect people at about the same age. Obviously you are much younger than your mom was when ALS was diagnosed. It is very common to be hypervigilant with what you have been through, but it doesn't sound like ALS at all.

An ENT can look at you, even over video to an extent if needed, to see if there is a problem that should be addressed. Meanwhile, it could not hurt to try a dry mouth spray, drink more water or juice, and think about any foods you might be allergic to.

Best,
Laurie
 

Foodie1

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Nikki

Can the results between C9orf72 presymptomatic test versus a diagnostic test be different ? Can someone be negative presymptomatic but positive on the diagnostic version of the gene test ??

Thanks
 

Nikki J

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If you are asking about the test for the c9orf72 genetic mutation no. Your DNA is your DNA from conception on. That is why some carriers are choosing ivf to have children. They can test the embryo before implanting and only continue if the embryo is negative for c9 or whatever the mutation of concern is. And the test a potential carrier has is the exact same lab test a PALS has The test doesn’t diagnose someone with ALS it shows if they have that particular mutation as a risk factor
 

Foodie1

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Just throwing this out there to everybody. I want to go the the Mayo Clinic and was curious to know which location has the best neurology department and possible doctors who have seen a lot of Bulbar onset patients.


Thanks
 

Nikki J

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If I were you I would try to be seen at Wash U in St Louis. It may well be difficult to be seen in any ALS center given your normal emg but there is no reason to go to Mayo when you have outstanding doctors in your own state
 

Foodie1

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Hi Nikki
I am very impressed that you know Wash U in STL. I actually saw Dr. Miller there a couple of months ago with a negative EMG and with a positive chronic nerve change diagnosis. With everything else being negative in terms of bloodwork and biopsies etc. I’m worried that I have Bulbar onset especially since my mother passed away from it. I know the EMG was negative but they only tested my tongue and not other areas on my face. I know that doing just the tongue should be sufficient but just worried as my symptoms get worse with my facial soreness, neck jaw face muscle twitching, facial cramping, Tongue soreness and throat weaknes I can’t have a conversation more than 15 minutes with my throat feeling sore. Something is going on and I need to get down to the bottom of it. I don’t want to wait until I can’t walk and can’t talk to get diagnosed. That is why I am thinking about Mayo

Jason
 

ShiftKicker

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Mod note- moved from General to your already open thread. Please keep posting about your own health concerns in this thread.
 

Nikki J

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Dr Miller is an outstanding ALS specialist. He was a corecipient of the Healey Prize for his work on tofersen for SOD1 ALS. You were lucky to see him. I have 2 friends who are seen there and know they make tricky diagnoses. If Dr Miller will see you again I would return so he can assess your perceived progression.
 
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