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Hi, its me. Got the bad news today from Dr Heitzman in Dallas.

I am in shock, was somewhat ready for this but praying and hoping that the lab work would find something else, it didn't.

Don't know where to start or what to do next, a day at a time I guess.

I am hoping since it seems my progression has been so slow that it stays that way. Just really both arms and haven't lost the ability to do anything yet thank goodness.


I wanted to check in, a lot of kind people on this forum have been there for me and I really appreciate it.


Kim-
 
Oh no! I was so hoping for different news for you. As you say one day at a time. Hoping for very slow progression for you.
We will be here for you. Once the shock wears off you will have so many questions. Ask away.
 
Kim, sorry to hear that.
Slow progression generally stays slow. But not always.

Did Heitzman actually settle on ALS as your official diagnosis?
If so, get a letter of diagnosis and a copy of the EMG results and call Social Security for SSDI and Medicare. ALS is a "TERI" disease in the SS lexicon, so it gets fast-tracked.
 
He did settle on that DX today. I will get the letter and EMG and start working on Medicare and SSN benefits. I am still working so need to figure all that out as well? I make quite a bit so we are in for a lifestyle change I think.
 
I am so sorry that you have to be here
 
Kim, many people continue to work as long as they can, but others decide to do their bucket list.

We decided in my family to maximize family time instead of working.
 
I am so sorry . Dr. Hienzman is my dad's doctor. He knows ALS well. He will do everything he can for you. The people at the clinic there have treated my dad well. My dad is 80 and has limb onset.
 
I wish we could afford not working. We will figure it out. Just terrified right now.
 
Welcome to Heartbreak Hotel.

There was a Gary Cooper here in Surf City that succumbed to ALS a couple of years ago. Possibly a relative? He had a Porsche repair shop.
 
Kim,
I'm very sorry. I was officially confirmed two weeks ago. I was and am in shock also. But the support you will get here is unbelievable. The people here are living it! They have been there and know best.
Everything is so new. The new norm? Up and down consistently. Did they give you prescriptions?

I still haven't gone all the way through the stack of papers they sent me home with. Someone here gave me good advice, and told me to take my time.
Best wishes,
Mart
 
Hey Mart

Sorry that we are in the same boat. This blows! I really hope mine goes slow. My son gets married next year and I wanna see that for sure. I hate this sentence and don't understand how I was so unlucky to win the medical rare disease lottery. I am still trying to come to terms with all of this. Really scared to be honest.

I am glad I have each of you. Support makes all the difference.
 
I am so sorry . Dr. Hienzman is my dad's doctor. He knows ALS well. He will do everything he can for you. The people at the clinic there have treated my dad well. My dad is 80 and has limb onset.

He is wonderful
 
Sorry for you as well. We are all here for you, though.
 
Kim,
The reason I asked you if they gave you any medication is because they gave me a prescription for antidepressants.
I think they are beginning to work today.
Seems like I was a little less down today. They're supposed to take several weeks to work.
Marty
 
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