Clinic tomorrow in Houston

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nebrhahe53

Very helpful member
Joined
Jun 13, 2014
Messages
1,017
Reason
PALS
Diagnosis
06/2014
Country
US
State
Tx
City
Austin
Wish me luck. Each time I've come here I've been worse. Now I can't walk with my head up, I think my fvc is going to be awful and my left hand is clawing. Right is starting to give muscle cramps so not far behind. Have a feeling I'll be doing some crying tomorrow night.
I take 15 pills twice a day and I wonder why. None of them do any good.
 
I wonder what the 15 pills are for?
 
I wish you the best for tomorrow. I hope things won't be as bad as you expect. Tears are the lot of us all on this journey, as we share the pain of each other. I can hold my head up, but I can't walk. Still waiting for GM604 to be approved . . . for a glimmer of hope for a cure. Let us know how your clinic appointment went. Thinking of you, praying for you.
- Charlene
 
Neil,
Please don't set yourself up like this. You know what your condition is. These numbers are numbers, not real news. Let's just stipulate now that your breathing is progressively worse.

Go in w/ the questions and actions you want addressed (the only real reason to spend 6h on the freeway, right? and have you considered phone-e-mail for those since going only seems to depress you?), not hanging your head (pun intended) over what they will tell you. Focus on what you will tell them. And honestly, if nothing useful occurs to you, I'd come up with something or stay home.

I just hate to hear you suffer more for no reason. I know how hard it is to see it like this, but while there's still some life that you want to live, why not live it straight up?
 
We all care about you on here Neil. Sending you a group hug. Kim
 
Neil, I can on try to imagine what you feel, but as a CALS I know the pain is more manageable when acceptance is present and we live with what we have instead of constantly mourning what we have lost and will lose. Laurie is wise. Much love coming your way, and compassion, along with prayers that each day offers some enjoyment, some pleasure, some love to help you live the journey.
 
>Please don't set yourself up like this. You know what your condition is. These numbers are numbers, not real news. Let's just stipulate now that your breathing is progressively worse. ... I just hate to hear you suffer more for no reason. I know how hard it is to see it like this, but while there's still some life that you want to live, why not live it straight up?

Ditto that!

Hang in there today, Neil!
 
Neil I think if you dont feel you are getting something positive from going then I would consider finding a doctor locally who could manage me or do telemed. Remember you are in charge!
 
We only went to our clinic twice - first to be diagnosed and then one more visit and Chris said it wasn't worth the drive of nearly 4 hours each way. Neil he felt that they only gave us numbers to tell us what we already knew and it was for their benefit in gathering data more so than his benefit.

So we got a great physician and GP. Physician less than an hour away and we saw him every 2 -3 months instead of the clinic and the GP 20 minutes away we saw more often for the small stuff, prescriptions and stuff.

That ended up working really well for us.
 
How are you doing Neil? I hope you are doing okay with whatever today brought you.
 
Yes I'm as good as can be. The bad news is my hands continue to deteriorate and my mucus issues are causing real problems with choking, the good news is that I haven't lost any more breathing capacity. It's the mucus that must be causing the air hunger
The 15 pills are all sorts of vitamins, riluzole, Ssri antidepressant, THC pill for pain- med mj is not legal here but the pill is, nuedexta, Mucinex, pseudo ephedrine, and a sleeping pill. Of all of them, the nuedexta and the sleeping pill probably do the most good. The rest don't seem to do much. Oh yes there are nasal steroids and Neil med nasal rinse.
Thanks for the thoughts. While I was there today I saw a guy about 30 in a wheelchair who could barely speak and had almost no movement. Heartbreaking. I said a prayer for him at least most of us have had lives, albeit shortened.
 
Oh yes, one of the pts there suggested lidocaine injections into neck muscles that were hurting because I couldn't hold my head up. When the neuro heard about that she had a cow. Apparently that would just damage an atrophied muscle and cause faster disease progression.
So even at the best places you have to be careful.
They have apparently developed a new neck brace that is much better than ones in use now.
 
G'day Neil. I have just read this entire thread in one go. I could feel my anxiety for you building with each post.
It doesn't sound like a wasted trip...I hope and pray it was that way?
All the best for the neck brace. Not sure what a pts is...but thank the Lord the Neuro heard about it!
For us women, finding the perfect clinic/Neuro/health care options is a bit like finding the perfect handbag...it just doesn't exist! What should we compare it to for blokes...?
God bless, Janelle x
 
Green queen pts are physical therapists.

Glad you had a decent clinic Neil. Steve hasn't found a neck brace that stays fitted that is comfortable for him. He has the headmaster and a really expensive one. Mostly he sits so his head is supported by couch cushions or wheelchair support Headrest. I have been using the moist heat from a towel or so.shying similiar for the neck pain. He says it helps more than meds because the muscles release.
 
Hi to Stanley & Karen :)
 
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