Status
Not open for further replies.
capt al

you are AWESOME, in all your posts you have only ever been supportive.
you are one of the most kind hearted,caring,giving people i have the privaledge to know,and it's your doctors who are in the wrong,not you.
they have let YOU down, you NEVER let us down al.
godbless
caroline
 
My dear Capt. AL

Dear friend:

I just came to read new posts, and usually I log on and come on to the forums, today
I took a look down on the first page and and read these wonderful news.

I will be praying and asking God for you and that this awful disease is not in you.

Love to you and your beautiful wife.


Paty
CALS to late husband Jorge
DX: 10/17/05
Freed from his sick body: 12/30/07
 
:cry:
Thank you, Thank you, Thank you. The water is running again. How do you shut it off?
 
Capt. Al, thank you so much for sharing your wonderful post with us. Please do not feel any guilt, instead feel blessed. You have come a long way with your faith in God, and He is looking after you. I do not see where you offended anyone. Prayers your way, friend! God bless!

Irma
 
Dear Capt.

Dear Capt:

JUST LET ITTTTTTTTT RUNNNNNNNNNNNNNNNNNN.


GOD BLESS YOU, I AM VERY :-D FOR YOU


PATY
 
Capt. Al,

This is AMAZING! I was not expecting to read anything like this when I logged in today. What a surprise!

You give all of us hope!

I know this has put you back onto the emotional roller coaster. It must be soooo difficult to go back to waiting and wondering. I hope you find peace. I will pray for you and your family for something curable. God Bless!

-Tom
 
Capt. AL:

God will provide! Glad to hear the news. I always did think you looked very healthy.
 
Good luck Capt AL! Sounds like you have the spirit and fortitude to persevere through any diagnosis!
 
What great news

Capt Al That is great news.
 
Capt. AL Dx with ALS again!

I just had a follow up visit with my Neurologist with the information I received from the ALS Clinic Doctor 3 weeks ago.

My Neurologist, Dr. Grow explained why she felt his possible diagnosed and recommended treatments would not work in my case.

I can not take the IVIG treatments because I have nerve damage to my bladder and my kidneys are in bad shape. I have almost gone into renal failure twice in the past due to high levels of cpk in the blood blocking the pores of the kidneys.

She said the IVIG was too big a risk because of the possible renal failure and also she had ruled out that treatment 2 years ago after she had been treating me for several months and saw the results of the NCS, FCV, EMG, and muscle biopsy.

She also said that when she first started treating me she saw the amount of fasciculation's I was having in both my legs and arms, and said this would not happen with the CIDP. She had also had an MRI of the upper spinal area, that I had forgotten about, and had ruled out any trouble with possible tumors or spinal cord involvement in the upper back or neck causing any of my symptoms.

She regretted to inform me that I definitely have ALS and the reason Dr. deAlvare had though I might have the CIDP was because he did not have all the records of the many tests she had performed on me over the past years, to make a proper DX.

For some reason the hospital had not sent all the records to Dr. deAlvare regarding my case, but had only sent the past year of records. DUH!

So, I am back to having a diagnosis of ALS.

I just wanted to bring you up to date on where I am in the progression of things. I know it sounds confusing, and it is for us. We are still considering possibly going to one of the major hospitals for further testing. Please pray for us that we may have guidance and peace in the midst of all this turmoil.

I'm sorry for getting everyone's hopes up for nothing. I just got so excited at the possibility that I had to share it with my friends here on the forum. I should have waited until all the information was in before mentioning this. :oops:
 
Last edited:
I can speak for so many who have had any contact with you when I say, never ever be sorry for sharing what could have possibly been good news, you are probably one of the people that I most would have loved to see a change in diagnosed.
You are one of the most kind, caring, loving, people any of us could have the honor to have been touched by.
Read back on any of your posts and it is clear that you are the most special of people. I am so sad that you did not have your diagnosed. changed, but that is for a reason, we just dont know what that is now. We were all cheering for a while, and although we are all disappointed, we enjoyed hope, and hey that is worth anything. I am Praying that maybe something will change, and maybe we can get a cure, so ALS will be curable in you Al. I think you having als is only proof that God takes the good ones tooooo soon from this Earth, they must be needed elsewhere.
I feel like you are a hero, and guess what, you are still diagnosed with that.....
 
capt al

i can't add much more to what hoping has said, we all feel the same about you, you truley are a wonderfull man and i'm so sorry to hear your news
god bless al
caroline
 
Capt Al,

Please do not feel embarrassed or bad in any way. Actually you may have helped someone that perhaps may have symptoms that don't quite gel with ALS and you may have started them thinking about 2nd or 3rd opinion. Who knows this person may get another opinion and be on the road to recovery. This could happen now or in the future as people search the forum for clues to their illness.

I am sorry that you were told you didn't have ALS. I'm sure you had somewhat of a little relief. Just know that you are not alone. AND- hope for a cure!
 
There is a song on my website called "Hero." It was written and performed by a man who's brother, Donald, has ALS and it is very moving. I do not normally like rap music, but this one I like. It is about ALS and all the things we face every day, and how his brother is his Hero for fighting this horrible disease.

The song will start playing automatically when you go to my page at:
http://www.myspace.com/als_bigal

"I consider myself to be the luckiest man on the face of the earth", quote from Lou Gehrig that so fits what I feel today. I have been blessed beyond measure. You can see what I mean, on my web page. Four children, seventeen grand children, a full and wonderful life. Married to my wife for 42 years, I am blessed. I have run the race, I have kept the faith, I am ready to go home.

Even though I am disappointed in the reversal of the Dx, I know it is for a greater purpose. Perhaps it is in this scripture:

Isaiah 57:1, "The righteous perisheth, and no man layeth it to heart: and merciful men are taken away, none considering that the righteous is taken away from the evil to come."

Only God knows.
 
Hey Captain- I was afraid this good news would not last for you. I am so sorry that it is back to ALS again. I wanted to warn you not to get your hopes up but how do you rain on such a hopeful parade? Bless you and your loving family. Hugs, Cindy
 
Status
Not open for further replies.
Back
Top