Worried about MND

[batgirl]

Hello,

I am a 30 y old female from Scandinavia that have had issues since the beginning of 2013.

It all started with me coughing like mad in the evenings when I was lying down, sometimes in the day as well. I put it down to post nasal drip or allergies.

In the summer I then started having trouble breathing, it was like I could not catch my breath properly. Like I could not get enough air in.

Later in the fall I started having what people refer to as bulbar issues; swallowing took a lot of work, tongue felt weird and heavy, when I was eating food got stuck on my tongue. At this point I was starting to think I was going insane, or at least there was something psychological going on.

But after a while my spouse urged me to go to the doctor for a checkup. He then thought my tongue looked as if it was quivering and refered me to a neurologist.

The neurological exam was ok except for a strange reflex in my thumb which the neurologist "thought" could be something. He ordered an EMG.

EMG was alright apart from the tongue that apparently was having fasics. I ordered my EMG report and it said no denervation or reinnervation in tongue.

After that I have had a lot of bloodwork, MRI, taken spinal fluid, when to a speech therapist, swallowing study etc. Nothing. So they wrote the tongue fasics of as benign.

But, now my spouse says I am sometimes slurring my words. And the tongue still feels weird. It is not getting better, it is getting worse. And now I have started to have strange twitches in my limbs. Like jerks, when the leg just bounces. Or my shoulder.

Could the EMG have been done too early? So it didnt pick anything up? Noone would be happier than me if this was all benign. And I do listen to my doctor. So I am not saying it is ALS, I am just worried.

Slurring is mainly s becoming ch and sometimes my r's falls out so to speak. Like I can't say my r's properly. BUT, if I go back and say the word again, then I can say it correctly. Maybe MND slurring is not like that, e.g you can't go back and correct the word.

I do not speak more slowly, but I feel like it takes a lot more effort.

Any advice or input?

Finally, I admire all you people going through ALS or another MND; you are heroes, fighters, and I hope they find a cure as soon as possible.

 

[Tokahfang]

What did the speech therapist say about your speech?

 

[batgirl]

When I went to the speech therapist I didnt really have these issues, my spouse commented on my slurring a couple of months after I went there.

Speech therapist said I had a slight nasality on my "i", but that is how I have spoken as long as I can remember, and so I told him.

Up until my spouse commented I frankly thought that the speech problems I felt I was having was mostly in my head, so I didnt even tell him I was struggling, I didn't want to worry him. His mother had Parkinsons.

But after he told me I taped myself while I was on the phone, and on one call I could hear it myself. But I am not sure if it is slurring or if it is just mispronounciation, but the s to ch kind of sounds like slur.

I don't like going on the internet trying to find answers because you type in "slur" and all of a sudden horrid conditions come up. But I had to take the bull by the horns and at least ask here.

 

[affected]

Hi batgirl

I can understand you are concerned. I would urge you to go back to your doctor and ask these questions, or even better, go back to the speech therapist as they are well trained in all this and he will quickly note the difference since your last visit.

 

[batgirl]

Yes, I will do that, that is good advice.

Two remaining questions;

1. Could my EMG have been taken too "early", as in not picking up the abnormalities?

2. If you are slurring from MND, can you go back and correct a word immediately after that you slur/mispronounce?

Thank you!