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jellis86

Distinguished member
Joined
Jun 22, 2012
Messages
256
Reason
PALS
Diagnosis
02/2013
Country
US
State
WI
City
Eau Claire
Well, I suspected it but wanted to deny it...I still can deny it can't I? LOL

He says he suspects ALS because I have had muscle twitches along with my speech issues. All other tests he gave me have not changed since last Oct. He says it continues to be contained in my bulbar region.

So now it is onto Mayo in Rochester!
 
Probably too soon to say yet.....

OK...so I probably jumped the gun posting that before I go to Mayo...it's been a year since I have started my medical testing to find answers about my speech/bulbar issues.
So I'm just growing slightly fatigued with all the waiting and when he said, "I think it's ALS", I just lost it for a couple of hours.

But I'm fine now and actually looking forward to going to the Mayo Clinic for, hopefully, a definitive answer!
 
I remember with my dad's diagnosis we were in Denial for a very long time. Nobody wants to believe it and acceptance take a lot too. Your in a good place knowing where to get medical care and hopefully you have a good support system.
The people on this site have been amazing to me and their advice is helpful and honest.
 
It took 7 months to diagnose my wife in 2008. She even had one physician that wanted to do carpel tunnel surgery on her, which would have been not only painful, but worthless. She was a brave warrior until her death in Aug. of 2012. Nothing could deter the disease,not medical knowledge,not good wishes or anything else . It is almost always fatal and it is final. It wins most almost all of the time. Sorry to be so blunt, but what I say is true, not just a pipe dream.
 
I would like to apologize for the poster Hangingon. He is very bitter and angry. Many of us LIVE with ALS, and while he is right about it being fatal, a lot of PALS lead very happy and fulfilled lives. Hang in there, and a positive attitude can do wonders. Don't give up. NO WHITE FLAGS!
 
my life has been good on this journey primary concern get my wife settled in a home she can care for and no outside respnsibilities, done still building memories after 57 years
 
try not to waste time on a denial period, learn all you can about it. i strongly believe there are things you can do to extend life expectancy and be pro active to prepare for future before needed. immediately set to get body as healthy as possible
 
Good luck at Mayo Clinic. Hope that they find it not to be ALS.

Mohan
 
Thank you sadiemae and Mohan for your encouraging words/thoughts!

Chase and pearshoot, I really don't think I'm in denial.....
Like a friend of mine told me on here...."Remain Cautiously Optimistic", and that's exactly how I want to deal. I have several anomalies that do not fit into the typical ALS model. Maybe they are just that, anomalies, but until I know for sure I have to remain positive. In fact even if I am diagnosed with ALS, I still want to remain positive!

I think it's worth noting that I have been researching here and other places for the last 7+ months.

hangingon1, I am so sorry about the loss of your wife. All I can say is that God controls when and how we die.

Ecc 3:1 To every thing there is a season, and a time to every purpose under the heaven:
Ecc 3:2 A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;

The whole point of Ecclesiastes chapter three is not that people are born and die, or that people plant and harvest, or that people war and make peace, or that people weep and laugh, but rather that there is "an APPOINTED TIME" for all these things to happen—an appointed time appointed BY GOD.

This is not a new idea, or a new revelation. This truth has been preserved in chapter three of Ecclesiastes for a couple of thousand years. But how many Christians believe it?
 
Got my appointment at Mayo!

I go the 14th of February and probably will be there at least that week and a few days the following week.
 
I have fingers, toes and I crossed my heart for you. Good luck! Keep us posted.
 
I also choose to remain optimistic until told definitively that it is nothing else... so good luck and keep us posted!
 
I just want to say one plus for Hangingon1. Though he still is struggling with the loss of his love, I can see more positive and helpful posts from him lately. I thank Jellis86 for her insight and wish her well.
 
I hope this is ok to post in here. I do not want to take away from your post but I too just heard my neurologist 02/01/2013 after all the blood test and MRIs and the EMG gave me the diagnosis that he cannot find any alternative to my symptoms not being ALS. I have opted for a specialist in OKC on April 5th since I live just outside of Tulsa OK. I of course am scared to death and wondering as anyone would what now? I can feel it trying very hard to take my legs away from me and in my hands as well, I have major fasciculation’s in my arms and legs and my wife affectionately calls me her Mexican jumping bean.
 
Sorry to hear that gseller. You can start a new post from the front page at the top. It is very scary and hard to accept when you get this diagnosis but we are here for you.
 
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