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kellykago

Active member
Joined
Feb 11, 2012
Messages
63
Reason
PALS
Diagnosis
12/2016
Country
US
State
CA
City
Fairfield
I've been experiencing slurred speech for about a year. In Mar I saw a neurologist and in April I had a speech eval and emg that were normal. In July my neuro saw tongue fasciculation and ordered genetic testing, which showed variant on ALS2 gene. In august I repeated the speech and was diagnosed with dysarthria and dysphagia and tongue fasciculation. Last week I had my second EMG that showed something in my tongue region. I was re-evaluated by neuro yesterday and after her review of all my tests and hyper reflexes on exam, she diagnosed me with possible ALS. She told me she will see me again in three months to evaluate any progression. She said my progression is very slow, in her opinion.

I think I am numb or in a sort of denial, as I don't have a lot of emotion about it all yet. Maybe it's the "possible" in the diagnosis.
 
So sorry to hear that it is possible that you have ALS. I completely understand being numb... It's ALOT to process. Try to just put one foot in front of the other and give it some time. I hope that in 3 months, they will determine it is something else.
 
nikki J

I noticed that you deleted a couple of replies to my posts. Can you explain why you delete them? were they inappropriate responses?
 
We were hit by a spammer
 
So sorry to hear about the dx, Kelly. I would recommend a 2nd opinion (at least scheduling it, which can take a while) while you are waiting for followup w/ the first neuro. There is a sticky up top about the second opinion process.

Since whatever you have is affecting your speech, you might want to look into text-to-speech apps for your phone or tablet. Some are free and others have free demos. If you search on that topic here, you will find some suggestions for ones to try.

Best,
Laurie
 
I to have been experiencing slurred speech for about a year. My slurred speech started in Dec 2015, in Feb 2016 I was seen by emergency clinic which thought that I may have had a stroke, but those tests were negative. In Mar 2016 I saw a neurologist and in April my first MRI for unknown reasons. I have had a barium swallow test in May and July and July showed sever swallowing problems all tests were done by a speech therapist. I have had 3 EMG’s that were normal. Each time I saw my neuro she saw tongue fasciculation and started suspecting ALS. I was diagnosed with sever dysarthria and dysphagia. My neuro stated progressive bubar palsy an onset of ALS. I will be reevaluated in Nov which will be three months since diagnosed. Right now I have sever slurred speech, and swallowing, I get fatigued easily which causes the symptoms to get worse. I am still unsure that this is ALS.
 
Kelly, I am so sorry that you find yourself here. Laurie is right, start working on that second opinion now. I hope against hope that they find something else. In the meantime, we are here.

Becky
 
All the best to you and yes, do get that second opinion.
 
Sorry Kelly. I wish I could get rid of this monster disease.

Keep us posted, and when or if you get a final diagnosis, I can assure you that you will receive a lot of help on this forum.

Hugs,
Deb
 
my speech doesn't seem to be getting progressively worse. It seems to be pretty steady at this point. However, it does get worse when tired. I do seem to tire more easily than I used to and seem to pay the next day for a really active day.

I recently added L-Serine a non essential amino acid and I swear it has helped. I redo my EMG in December, so I am hoping for more answers....
 
Kelly why does your profile say you were diagnosed 5 years ago?

Maybe you will be a slow progression PALS with luck.
 
Kelly why does your profile say you were diagnosed 5 years ago?

Maybe you will be a slow progression PALS with luck.

She originally joined the form when her father was diagnosed in 2011. She has since been diagnosed.
 
yes you are correct. My father was Diagnosed with bulbar ALS in 2011. He passed in Feb 2012. Quick progression....
 
I'm so sorry to hear this, Kelly. Very similar to my mom's story. We finally got a second opinion and had the "possible" confirmed just a few weeks ago. Then, her first clinic a few days past that. There was some progression and she has very minor weakness in her left side. We are hoping it remains a slow progression as well.

It's okay to feel numb. That's how I feel right now (after a few major breakdowns, denial, and anger first.) You are right, and there is still hope and they may find something else. Fingers crossed for you! Truly! Get that second opinion as soon as you can regardless. All the best to you!
 
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