Newly Diagnosed.

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texastracy

Senior member
Joined
Jul 27, 2013
Messages
500
Reason
PALS
Diagnosis
09/2013
Country
US
State
TX
City
Acuff
I have been reading posts on this forum site and now I'm joining you as a member. I was diagnosed today.

Tracy
 
Hi Tracy,
I am so sorry for your diagnosis. You will find alot of support and information on this forum though. My dad has ALS and has went to some clinic in Dallas. I can try to find out who he see's there if you're interested. I could put it on your profile wall. I'd have to find out though from my brother first who it was. Keep your chin up because they are making strides in coming up with new medicines to help. Maybe, you can get into a clinical trial? Kim
 
Tracy I am very sorry. I believe you have a family history? The good news is there is ho pe for treatment for the 2 most common defects sod1 and c9orf72. Gene therapy trials phase 2 for sod1 and 1/2 for c9. Ask your ALS neuro about antisense technology

Take care
Nikki
 
tracy im sorry and thinking about you x
 
Sorry Tracy,
I just fould out about 6 weeks ago that I have bulbar palsy, once the shock wears off... just try to take care of yourself. I take a lot of vitamins, try to eat right. one thing about this disease, no dieting.
 
Tracy,

I'm really sorry. Really.

I'm holding out hope that the second opinion at Baylor will prove them wrong. Your earlier posts states the Lubbock neuros. are inexperienced with ALS. Maybe they missed something?

If you end up getting a firm ALS diagnosis, please keep in mind that everyone here is ready to help you. I know the thought of a bunch of strangers on the Internet offering help may seem inconsequential at first glance, but I swear, I have made the best friends I've never met. Right here.

There is life after diagnosis.
 
Sorry to hear of your diag. Seem to have quite a few PALS from TX on this board.
 
That would be great. My neuro here in Lubbock won't give a final diagnosis. He wants the experts at Baylor in Dallas to see me to get that.

Tracy
 
Tracy...my neuro highly suspected ALS but didn't want to say for sure either so he sent me to the Mayo Clinic in Minnesota. In my case they agreed with his diagnosis.
But there are many other issues that can cause ALS symptoms. Let's hope they find another cause for you!
Stay positive, hopeful, and focused on life!

BTW...I lived in Lubbock back in the late 70s, stationed at Reese AFB. I loved the area!
 
Welcome to the club none of us really want to be a member of. But there is a host of good ideas here and we are all in this hot water together. Every progression is different, every patient is different, but will help you anyway we can.
Hollister
 
My husband is having a really hard time. We have been married 26 years and are the best of friends and soul mates. Though we are holding out hope that we will find out something else in Dallas. It turns out my neuro doesn't know his clinics and location. Baylor is at Houston. We are going to MD/ALS clinic in Dallas.

Tracy
 
Tracy, I am so sorry. I was diagnosed this past April. The one that has taken it the hardest is my husband. We have been married 24 yrs. It does get better as the shock wears off and you come to terms.

I go to the ALS clinic in Dallas. I see the same doctor that skipper's (Kim) dad sees. She left his name on your visitor board. He is also the director at Texas Neurology. He is a very good doctor and will do his best to rule out everything else before he will diagnose you with ALS. Very through doctor. I am keeping you in my thoughts and prayers.
 
Thanks for all the caring comments. If I had not called my primary care doc 4 weeks ago I would have been such a scary mess. They put me on antidepressants and that is helping me stay sane at this point.

I am a 2nd grade teacher and going back to work on August 12th. This will be my 28th year. I am very early with symptoms: left hand atrophy and weakness between thumb and finger. Right hand has the same area of weakness. Twitches that jump around all over my body. I went to the neuro because my grandmother passed away from ALS.

My favorite hot tea is Earl Grey brewed lightly with a lot sugar. Lipton makes a good mango green tea for cold tea. Sip a cup today and enjoy life

Tracy
 
Did you miss the forum titled" Newly Diagnosed"?
 
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