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KTurl

New member
Joined
Mar 27, 2013
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5
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Loved one DX
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US
State
Missouri
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Kansas City
Hello,

My dad has just started doing some tests after meeting with a Neurologist last week because she thinks he may have ALS. It will all come together next week on Wed. Apr. 3rd when we go for an EMG. This week he has seen an ENT (I believe just to rule out that he has any growths or tumors, etc) and he will go for a spinal MRI on Thurs.

His symptoms started off in a weird way to us and he began having the slurred/nasal speech and problems swallowing just in Dec. while he was in the hospital for a hematoma. We all thought he was just having an allergic reaction to an antibiotic he was taking. Fast forward to today and his speech is getting worse and he can barely keep any food down. Hearing that there is a possibility of ALS has been a shock as we thought it was something minor like an allergic reaction.

Anyways, I have been reading through the forums before I actually joined today and I have to say that I am so appreciative to read that others are feeling the same way and going through the same things. I truly appreciate everyone taking the time to share their experiences and to offer the support that I have seen on here. Of course we still have our fingers crossed that it isn't ALS but as the days go by it gets harder and harder to think that it could be anything else.

I will let you know what we find out on the 3rd!

Thanks so much!
 
Hang tough--the shock of diagnosis (or expected diagnosis) is really horrible. I am glad you are here--you will get alot of support. you might suggest your dad join too.

B
 
The diagnosis and the acceptance are the hardest steps on this disease.
But, there is life after that. You just need to adapt to the future changes.
Here you have a network of CALS and PALS alike willing to help and answer questions you may have.

Take care.
 
Good luck to you and your dad. I have fingers and toes crossed that the outcome is good. But if it turns out other wise we are here for you both.
 
I pray your Dad's outcome is good, KTurl. But I can't help but relate. My husband had the same symptoms and he thought it was a reaction to the novacane from dental work. As he was going for various tests he kept reassuring us it was nothing. Deep down I had my doubts and worries, as did my daughter. We both knew the handwriting on the wall. Your letter reminds me so much of what my daughter was feeling about her dad. She was the first to find this forum and to send a similar letter. And here we are over a year and a half later. Life goes on, we are all making the best of this diagnosis. This forum is so supportive and informational if your dad's diagnosis does turn out to be ALS. I'm praying for him that it is not. Blessings to you and your family!
 
Thank you all so much! I appreciate your support and concern!
 
Your Dads symptoms sound a lot like mine too. I started out with swallowing issues but didn't have a clue what the problem was and when I told my GP he looked at me like i had 2 heads. The swallowing actually got better but then my speech started to sound nasally and slurred.

My wife was convinced it was being caused by dental work I had just had done, but deep down I knew it wasn't so simple.
For me it did turn out to be ALS, but there are so many other things that cause the same symptoms.
Easy to say, but try and stay positive.

Here is hoping and praying they find another reason!
 
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Well, we go back to the Neuro today. I am concerned because I think my dad may have aspiration pneumonia but refuses to go to the Dr. until he finds out what the heck is going on...we actually tried to take him to the ER on Sat. but after sitting for over an hour with no contact from any doctor or nurse, we all got ticked off and my dad desperately wanted to leave so we just left. He's obviously very worried and DID NOT want to go in the first place so we agreed...I think also we all just wanted to make it to today and to get the EMG done and then worry about the pneumonia later. Doesn't that sound terrible? We are all just so scared and did not want to have to put off the neuro visit any longer than we have already had to! I did call the neuro's office and spoke to two different nurses on Mon. who assured me that they would talk to the Dr. and call us back and we never heard a thing back. I really hate the "health system" he is in right now.

One thing I am worried about now is that after reading different threads I have seen where it may take several different EMGs to get definitive results. Is that correct? I am guessing it depends on the progression of symptoms but we have it in our heads that we would go today and be able to walk out of there with a specific reason for all of his symptoms. ARGH! :-x

Just nervous. Thanks!
 
Good News!

Hi! We got some great news yesterday. The Dr. does not think my dad has ALS, but she does think it is Myasthenia Gravis.

They put him in the ICU last night and by this morning he is alread showing great improvement! Thanks so much for all of your kind words and support. It was very appreciated!
 
Thank God! That is fabulous news! Hope he continues rapid improvement!
 
That is very good news for you and your partner!
I am really happy for both of you.
I do hope he keeps improving and regain his health.

NH
 
Oh that is super! That is a treatable problem. Good news Yippee! Keep us posted.
 
So glad the cause of his issues is not ALS!
Happy the treatments are helping!
 
Gosh, what wonderful news. God bless and enjoy every moment with your dad as he recovers and onward.
 
Thank you all so much! I truly appreciate it! I will keep you and your families in my prayers!
 
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