Not me too!

[PDaddy]

Well, tomorrow I see a specialist at Loma Linda. I am looking forward to seeing him and start some treatment or trials or whatever. This sucks. I will "graduate" to one of the other forums here after I see him. :neutral:

 

[CindyM]

We will keep your and your wife in our thoughts, PDaddy!

 

[LindaB]

PDaddy,
I have to say that emotional incontinence was my most fearful symptom too. Everything else, I could find a good excuse for. When my doctor first DX Maysthenia Gravis, I scoured the Internet trying to find out if Emotional Lability or incontinence could be a part of that. I could not find it anywhere except for ALS. I went back over family movies and found that early on in my symptons, I had the same reaction you have to a funny situation. I could not speak I have to say it terrified me. Now, my dread has come true and I am DX with ALS. I think about this a lot, that emotional incontinence was always there. I hope that the same will not be true for you, but I thought I should share my experience. Blessings to you, Linda

 

[PDaddy]

Thank you Linda and Cindy. I don't know if my 'face lockup' can be called Emotional Incontinence or what. But it is still happening or maybe even happing more often. The other day my wife and daughter were watching a chick flick and towards the end, I broke down and couldn't speak and I was crying. I never cry, before this.

And I am at work today but my arms are twitching so much I may go home early before someone notices. I haven't told management here about my initial prognosis, I will after tomorrow. It could be my Loma Linda appointment tomorrow is causing stress, but in my mind it will relieve stress...

 

[PDaddy]

I forgot to mention that my GP doctor prescribed Lexapro for my uber-emotioniability. I haven't started taking it yet, I want to see if the Loma Linda Dr agrees with the meds...

 

[hopingforcure]

P. I know for myself, the emotiona liability is really hard, I am a mess without a ssri like Paxil, or lexapro, or wellbrutrin. I cry if you look at me the wrong way, or even the right way for my son, I will cry because I will not be around for his life in my mind, so then I cry again. UGGGHH.. Good luck at the appt. Keep us posted, we all have been, were you are, we all get it, that is the thing with this forum, it is the only place that people get us...SO go ahead cry, we will cry with you..LOL..

 

[PDaddy]

Good grief, I started tearing up reading your post..

 

[hopingforcure]

You got the sense of humor part, and hey that is one of the biggest hurdles we have, so glad you found us. Write soon.. Hoping

 

[sharonca]

I've met the main dr at Loma Linda ALS clinic - Dr. Laura Nist. She seems very nice and up to date on info and treatment. She attended a support group at the hospital with several of her staff. When I get tired of the drive to UCLA I'm going to switch to LLUMC. Good luck with your appt. If you do "join" us in the worst sense of the word you might want to attend the monthly support group - great group of people.

Sharonca

 

[PDaddy]

Thanks Sharonca,

I did not meet Dr. Nist, but the doctor I met was great. I'll keep my doctor's name out of here for some reason. Should I list it?

Anyways, The Dr at LLUMC re-ran the NCS and and EMG and the other office tests (rubber hammer etc) and concluded I do indeed have ALS. He put me on Riluzole and Lithium right away, I will start today and he will watch my liver for a couple of weeks.

Now, I'm a PAL? :-?

 

[happy]

P. Daddy, I have been reading your posts over the months and wishing you the best...I read today and I am sad. I'm sorry. I will be praying for you and your family...

Robin

 

[sharonca]

Oh, I'm so sorry. I read your post and just busted out crying. Just so you know, Lithium has worked well for me. I am steady with a good blood level and check it every two to three weeks. I'm so happy they were able to give you prescriptions right away. If you are interested in the support group maybe I'll see you there. And no, I wouldn't necessarily list my doctors.

Sharonca

 

[rick/Wpg]

Hey P Daddy....so sorry to hear about the DX!
What a kick in the guts! It takes a while to get your breath after that!
Sounds like you are doing all you can do tho...and have good connections with the docs!
Our thoughts and prayers are with you and your family!
Rick

 

[PDaddy]

Thanks to you all. Our pharm didn't have the riluzole or lithium, time to call around.