I DEFINITELY have atrophy/fasciculationss and had MRI - advice needed please

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maryanning

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Hi

Please can anyone give me any suggestions as to what is wrong. I have had an MRI but awaiting results (they take 2 weeks).

My tongue has atrophy and fasciculations and one of the nerves (under tongue) is yellowy, numb and swollen. Speech is affected but I can swallow. Other than that I am fine.

I haven't seen a neurologist yet but everyone in the hospital that has seen me have no idea what is wrong, which is pretty scary.

Does this sound like ALS ? or hypoglossal nerve palsy?

Thanks
 

JEB1979

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None of us here are doctors. Have you made an appointment with a neurologist yet? Have you had an EMG done?
 

maryanning

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Hello

I have asked my doctor (who referred me to hospital) to get me an appointment as I am having problems getting through on my own.

After the MRI I was told that it would take 14 days for results so I am feeling worried and wondered if anyone had experienced something similar in terms of symptoms (I wasn't expecting a diagnosis).

I found a YouTube video of someone with something similar but unfortunately they didn't post another film to say what they had discovered it was.

Haven't had EMG but was told I might need one next.

- Sorry. Perhaps it's silly to ask for help but it's the not knowing which means I am finding it hard to focus on much else.
 

goolia75

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Why do you think you have atrophy? Did your doctor say he saw atrophy or are you just noticing the atrophy? What does your wasting look like? What do your fasciculations look and feel like, and when do you notice them?

Diagnosing neurological conditions can take months, and sometimes years, before you get an answer. The MRI isn't likely going to give you any answers. You can't put your life on hold waiting for a diagnosis. Go do something you enjoy and live your life now. Have a great day!
 

maryanning

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Yes, it's not just me that can see the atrophy. It's very obviously pointing to the right, especially when I stick it out fully and one side of my tongue is constantly twitching and trembling as if full of worms. It looks asymmetrical with a small dent and then a sort of extra flaccid bit at the end - almost as if something is sticking out of it.

I hope I won't have to wait too long to find out what the problem is.

Thanks, that's a good idea. I can distract myself from thinking about it sometimes but I am feeling self-conscious when speaking because when my tongue "spasms" I think I'm sounding difficult to understand, which I'm not used to.
 

maryanning

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JEB1979
I have taken one but for some reason I can't post attachments :confused:
 

JEB1979

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Try uploading it onto imgur and just post a link on here...I think that would work.
 

JEB1979

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It says "photo unavailable."

Could you try imgur.com instead? Might have more luck with that service.
 

JEB1979

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Yes, that's very obviously atrophied...I don't blame you at all for being scared and worried, I would be too.

You definitely need to see a neurologist as soon as possible and request an EMG and nerve conduction test of the tongue.

I'm not sure what hypoglossal nerve palsy is, but a quick google search doesn't seem to mention fasciculations of the tongue as a symptom (I may be wrong, I did not look too in-depth)?

Don't mean to be rude, but how old are you? Just asking because ALS seems to strike older people more commonly.

I myself am in my mid-thirties, and having some symptoms (mild compared to yours), but the neurologist has told me ALS is a possibility. I have fasciculations, but no tongue atrophy, and I have throat-clearing issues.
 

goolia75

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Mary, I would make sure to get that appointment with the neurologist. I hope that there is another explanation as to the reason. There can be other causes so keep your hopes up. Best wishes to you.
 

maryanning

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Re: I DEFINITELY have atrophy/fasciculations and had MRI - advice needed please

Thanks for your responses goolia75 and JEB1979.

It's horrible isn't it? I am scared but trying (not very successfully) to be brave.

I am 37, not usually anxious and have been healthy except for a spell of high blood pressure during my last pregnancy.

Hoping it's not ALS but until I speak to a specialist I am really in the dark :sad:
 

vickim

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Mary, worry will not help the situation. It won't change the outcome. My best advice would be to live your life and do what you can do. I know easier said than done but we have all been in your shoes. I hope it is something that is treatable, better yet curable but until you find out don't let it take over your life. I wish you peace.
 
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