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ldab

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My fiancé started struggling with occasional slurred speech a year ago. Mostly when he got tired or really stressed out. Went to his doctor and he said it was most likely stress. He ordered a Cat scan(clean)and said to work out and diet and things would improve. He never had time to work out and was always tired after work so never worked out. Since he never worked out, we kind of ignored it getting worse. Finally 6 months later he started choking occasionally when drinking and eating. Customers would ask me in private if he had a stroke. They started teasing him about drinking too early.

I made another apt and the doc sent him to ENT. His biggest complaint was that there was something stuck in the back of his throat. His throat was clean. Then sent to a neurologist and first blood test, MRI and when nothing showed he had a very expensive blood test for MG. Nothing. Referred to him to a university hospital that was well known for their neurology clinic. We were scheduled to wait 5 months for that apt. He soon developed big issues with emotions. Crying at nothing, laughing and making perverted jokes right in front of the kids. So weird seemed like whatever emotion he had was magnified. He said at first they "overtook" him. Now he says they actually hurt him. Cries for no reason, makes perverted jokes when he shouldn't. Began to struggle with drool.

I panicked at the new stuff and took him to another neurologist while we waited for this great hospital. Meanwhile I kept a journal and tried to keep him calm. This doctor gave him neuropsychological testing. And more or less said to wait and do it again in a year to see the results. WOW... really?

He has some tongue twitching now and he's dropping syllables and more than a paragraph of sentences will leave him out of breath. Speech is much worse, now at times I can't understand him. Chokes every meal has sores in his mouth constantly from biting his tongue. We finally get to the apt that will finally quiet our fears.....

The resident looked at us like she'd never heard the symptoms before. The actual doctor comes in and says well you do have a problem but it could be over 200 different things. You understand there is no pill to fix this. It might be a situation that only time will tell..........I wanted to scream.. TELL WHAT! WHAT IS TIME GOING TO TELL US! I bit my tongue for the sake of him, and he is scheduled for MRI tomorrow and EMG next week. Oh yeah and a follow up in two months! Why can't anyone tell us something!

I guess my question is.... what could he have that would cause this.... or that can be fixed. Or has anyone suffered with these symptoms and had them just stop progressing worse! Everything I've looked up gives only bad prognosis. He has full strength in all his limbs.... I don't know....its been a year. What's going to happen by next year. Why don't they have a sense of urgency.......Thanks for letting me vent.
 

Ms. Pie

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Wait for his EMG results. The doc is right. It could be on of 200 things. Be patient. Good luck and hugs to you both. Sometimes a DX can take awhile.
 

ysabel

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Hi and welcome I understand your fears. My speech can be hard to understand as well. I have troubles with falling and balance my dr says I have Parkinson's disease and yes many people thijk I've had a stroke. I've had no scans or emgs yet but that is my diagnosis.
Not saying its your fiances but like his doc said could be 100s of things. And many will say Parkinson's is for the elderly my onset was at 44 I was diagnosed at 46.
Although no picnic its better than als.
Just try to keep the faith and think positive.

Best wishes, Denise
 

ldab

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Well, yesterday he had the emg and was diagnosed with bulbar onset. I have researched for months and almost lost my mind worrying. Now we know. I don't really think its sank in all the way. He was very angry last night and certainly upset this morning. He owns his business and is a key role in its success... so lots to think about. Toughest part are the loyal customers who follow his progress. To just mouth those words is more than I can stand.....
 

vickim

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I am sorry for the diagnosis. Hopefully the progression is slow. We are here for you.
 

ysabel

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oh so so sorry! like vicki said we are here for you!
 

Baileygirl80

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I'm so sorry for the diagnosis, please know I will keep you guys in my thoughts and prayers!
 

pinkmoon11

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Hello! As i read your first post I felt badly for you and your fiancee as I started with the very same thing. My speech was slurred and I choked almost every time I had a liquid to drink. Crying was ridiculous. Long story short I went to my endocrinologist ( I always had an enlarged thyroid gland; which never bothered me.) She said my problems were due to it and they would have it removed. Problem solved, she said. After a visit to an ENT who prescribed nexium (what the heck!), I went to another ENT who referred me to a neurologist. I was lucky in that the diagnosis came quickly. The second diagnosis confirmed bulbar onset. :( I had a good job, had just retired and was always in the best of health. I was diagnosed in 12-12. It has been a continuous struggle. Day to day changes, it seems. But, we manage to get through. With the support of loved ones and the help found here. We are all going through this together. God is good and walks with us. Currently, and maybe this is too much information, I can barely talk. My diaphragm is very weak; which does not help with my breathing and my strength and energy. I use a bipap; which helps and I have a feeding tube. ---i am sorry for the diagnosis. Hang in there. Take it a day at a time. God bless you! ~~~Kathy
 

Barbie

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I am so sorry for the diagnosis. My husband and I also own our own business, and it is something that he will have to deal with sooner rather then later. Sell, close, or teach someone else to run...I know how tough it is--a business is like another child.

hang in there!
 

affected

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so sorry for the diagnosis, it's really hard to accept, but somehow we do come to an acceptance and begin the process of adapting, constantly.

My husband also has bulbar onset, and we were fortunate he sold his business before his hands and arms started to become affected. It was hard enough for him working with the speech, swallowing issues and sudden outbursts of laughter. (he hasn't had much problem with crying, usually he just laughs too much whether he is happy or sad or even angry)

We were only diagnosed a few months ago.

We are here to help you get through this, I don't know what I would do without the support of this place, so use it as much as you need.
 
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