Capt. AL No longer Dx with ALS? GET A 2ND. OPINION!

[MtPockets]

Well, Monday I went to see the Neurologist, Dr. Leo deAlvare, for the ALS Clinic at Lady of Lourdes Hospital in Lafayette, Louisiana, for the pre-screen to the ALS Clinic.

After reviewing all my medical records, and giving me a full examination, he shocked me by saying, "I do not believe you have ALS"!

Welcome to the undiagnosed group of people again.

He said I definitely have lower Motor Neuron disease, but I am not showing any of the Upper Motor Neuron disease symptoms. In order for him to Dx ALS he said I had to have both.

He believes there are several other processes that need to be examined for before giving up with the ALS Dx. What are they? His list of Possibilities

CIDP
Chronic Inflammatory Demylinazation Polyneuropathy

To find out if this is what is going on they will put me in the hospital and treat me with IVIG 5 days a month for 3 months to see if there is any change in my condition. If it is they may be able to put it into remission. Stop it in it's tracks. For more information on this you can go to: http://www.ninds.nih.gov/disorders/cidp/cidp.htm

Degenerated Disk Disease with twisting of the spine

I had a spinal injury 18 years ago, lower back L-5/S1 and have had trouble with nerve root adhesions and sciatic pain in both legs, for some time. He feels that possibly this has caused the nerves to die due to increased pressure upon the nerves. (Sounds weird to me)

Tumor on the brain or spinal cord

He said if the treatment of the IVIG does not show any promise he wants me to go to the Mayo Clinic in Jacksonville, FL. for a full work up of the spine, brain, and nerves for several other motor neuron diseases.

He said not to get my hopes up too much, because he has seen patients like me who first have the Lower motor neuron involvement advance into the upper motor neuron disease eventually.

So he is not ruling out ALS completely, but feels they diagnosed me too quickly, without doing ALL TESTS POSSIBLE TO RULE OUT OTHER THINGS.

So here I am with so many others on the forum, without a diagnosis, and having to spend money for more and more tests. But, if he is correct, what a blessing that he caught this.

Some hope has been restored, but guarded optimism is how I am looking at it all. With my God all things are possible.

Perhaps, God is not through with me yet? I'm ready for it, either way it goes. It's being in the dark that is so stressful.

Everyone, please get a second opinion, maybe even a third if you are not comfortable.

[Icanmanz]

Capt. Al! I am totally out of words!!! I will keep you in my prayers while you wait, and I pray to God it will be worth the wait! May God bless you! Oh yeah, I really enjoyed your myspace site! What a darling family! God bless you all!

Irma

[MtPockets]

Thank you so much. For those of you who may have not seen the page Irma is referring to you can see it at: http://www.myspace.com/als_bigal

Hard to believe I was on Hospice just last week with the end in sight, we all thought?????? Just shows only God knows.

[Peg B]

WHAT!!?

I read this with my mouth agape. I am shocked as I remembered you were going on Hospice. I hope you respond so positively to IVIG. God Bless you. Sincerely, Peg

[crystalkk]

That is great news!!!
Were you dx the 1st time by a ALS specialist?

They say the only way you really know is through an autopsy and we all know it's to late then.

[MtPockets]

No it was a local Neurologist. She had run all the tests she thought she needed including a muscle biopsy before she made the Dx. In the long run she may still be right, but there is always a chance.

[crystalkk]

Al,

Hopefully she was wrong!
I will be praying that the treatments work.

[CindyM]

It is a good thing I cannot think of anything to say because my mouth is still hanging open! Your story proves how important it is to get a second opinion, and how difficult it is to pin things down. I am sorry you came away with more questions than you started with but glad you have a reprieve!

[Al]

Hey AL. I'm off to Cleveland, Ohio for the weekend for a wedding. We need to talk. I'll pm you Monday.
AL.

[olly]

i don't believe they dx als then say sorry might not be,then to start allover again with the what ifs and doubts. i really feel for you,its terrible.
obviously god still wants you here to help others as you always do,and maybe giving you another life line,i really hope so, but spirits up,life is still going on, hopefully alot longer for all of us
godbless
caroline

[Peg B]

Hey Capt Al.

As long as they are looking - Don't forget MMN. It is also lower motor neuron and treated with IVIG. My first DX was ALS - "without a doubt." (local neuro - who sent me for the second opnion) The second opnion at U of M ALS clinic was DX possible MMN. But I still have both as possibles. Again, Best Wishes. Peg.

[trustinggod]

Capt. Al,

So happy to hear your news.

I'll continue with the prayers as I'am sure you and your family are experiencing "roller coaster" emotions.

What a wild adventure you're on.

In His Grace,
Jeanne

[hopingforthebest]

Wow! Wow! Wow!

God is the same god as the one who walked and performed miracles 2,000 years ago!!

If my husband received your news I would claim a miracle!!

Captain Al, your strong faith, persistance to prayer is awesome.


P.U.S.H.= PRAY UNTIL SOMETHING HAPPENS!!!


I believe it has for you sir!!



Patty:-D

[MtPockets]

Talk about mixed emotions. :confused::confused::confused::confused:
:cry::cry::cry:

I had to get away from the computer for a minute after reading your comments. The tears were making it hard to respond to all your kind comments. I love you wonderful friends so much, and wish we all could discover something treatable. I hope and pray that this is treatable and maybe we can get it into remission.

Dr. Leo said that if what I have is indeed CIDP and was not treated with the IVIG, it would go into full paralysis soon. I was headed that way fast. That is why my Doctor had put me on hospice. I did not want to alarm everyone about how fast it has been moving in the past few months, so that is why I hesitated to mention the Hospice situation. This may also explain the severe bone pain in my legs I have been having. This kind of pain is not normally associated with ALS.

Dr. Leo said IF it is CIDP, and I will claim that one, it may be treatable, and 90% of the patients arrest the disease at the point they are at when the treatment is started. Of those, 10% of those who have a good result from the IVIG may regain anywhere from 10% to 90% of their former function thru extensive physical therapy. WOW. By, faith all things are possible with God.

Now that I have said that, part of me says to remain grounded in my faith and realty, and not to get too excited, but hope has been restored.

I also am having to deal with tremendous guilt for those of you who have not been given this possibility for yourselves. Over the time I have been here on the forum I have come to know you as my family and feel a close bond to you. I can't possibly put into words what I feel, that you must feel, when you here of another "maybe" having this terrible motor neuron mess go into remission. I am definitely getting ahead of myself. I need to chill.

Please dear God, bless these my friends here on the forum with your peace in the midst of such confusing times. Bless them with your love and mercy through all that they are facing each and every day. For they are your children, and I know that you love them. You love them so much, that you gave your only son, that they might have everlasting life. Dear Lord, bless us all, as we do the best we can to make life easier and better for others. In Jesus name. Amen

I am not anything special. I'm not a gifted orator, or someone who walks around thinking they are better than anyone who is not a Christian, or anyone else. I am just a man, a sinner saved by grace, trying in my own meek way to encourage others, give them a better outlook on life, and just try to make a difference. I will never judge you. That is not my place. When I speak to you, I am just sharing what is in my heart. Each of us has to work out our own salvation, sometimes, with fear and trembling. If I have offended anyone, please forgive me. I surely did not mean to do it.

Well, I just reread this post and indeed I am confused. :)

My lovely wife Marge and the old geizer AL in better times.
http://i160.photobucket.com/albums/t172/ShakeyMarble/Christian/Family/ALandWife.jpg

[Shatzie]

Capt. Al-

Please have no guilt over this. If you were misdiagnosed, it doesn't make me feel worse, it gives me hope for the same thing. I feel wonderful for you that you have the hope of something else. My prayer for myself initially was a correct diagnosis, whatever it was. The ALS specialist who diagnosed me said he hopes I am one of those patients that in a year or so, because there has been little or no progression, he re-evaluates to see if something else shows up that didn't initially. Although I am accepting an ALS diagnosis and planning my life accordingly, it is my prayer that his suspicions are right.

[olly]

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

[Paty]

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

[MtPockets]

:cry:
Thank you, Thank you, Thank you. The water is running again. How do you shut it off?

[Icanmanz]

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

[Paty]

Dear Capt:

JUST LET ITTTTTTTTT RUNNNNNNNNNNNNNNNNNN.


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


PATY

[tmasters]

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

[vmd]

Capt. AL:

God will provide! Glad to hear the news. I always did think you looked very healthy.

[jimercat]

Good luck Capt AL! Sounds like you have the spirit and fortitude to persevere through any diagnosis!

[Thumbs Up]

Capt Al That is great news.

[MtPockets]

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 dx 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:

[hopingforcure]

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 dx.
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 dx. 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.....

[olly]

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

[jimercat]

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!

[MtPockets]

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 (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.

[CindyM]

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

[Peg B]

Dearest Al,

The last thing in the world anyone would wish you is embarassment. You are wonderful for all of us and we are thankful to God we have you here. God Bless you and give you his Peace each and every day. Happy Easter. (Ain't it a Grand Holiday?) Sincerely, Peg

ps. Have you read Works of Love by Soren Kieregarrd? You simply personify it.

[trustinggod]

Dear Al,

What a roller coaster you've been on. I am deeply saddened when I think of the disappointment you must feel and so wish I had the perfect words to bring you cheer.
However, we have a faithful Father who is sitting on His throne and He alone knows what the future holds for our time on this earth. BUT we know (those of us who have trusted Jesus) what the future holds once we are taken from this earth by our bodily death.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweights them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal."
2Corinthians 4:16-18.

Easter blessings to you and your family,
Jeanne

[MtPockets]

Thank you so much for your comments. They have encouraged me.

I always try to have a positive outlook for the benefit of others who need it so much in their lives. Yet at times when I find myself low and discouraged, I know that the members of the forum are quick to lift me up. Thank you for being there when I and others need you.

[Jamiet]

Capt Al,

I am going to see Dr. De Alvarae. He's probabaly the best in lafayette area.

I"m glad to hear of this. Have you met Mrs. Dora? How was their clinic?

Rgds,

Jamie

[MtPockets]

Sorry I am so late to get back to you. My computer crashed and took about 3 days to restore everything. I really like Mrs. Dora. I am working with her now to see what the next thing is for me to do since I did not get to go to the clinic.
I hope you have a good experience with them.

[Icanmanz]

Al, Bless your heart, and I will be praying for you, and your wonderful family. "Hoping" said it all, and she used every word so properly! Agreed with her post 100%. I can see why Cindy feels so badly for the current outcome. We wanted the best for you, because you are a man with a kind heart. I love my Almighty Father so much, but I still ask him, "Why?", "Why the person with such a good heart?" Al, I have not been on the computer, due to computer issues, but I was almost afraid to check on my friends. I am sure you know what I mean! May God bless you, and please keep us posted. Give Smokey a big hug!

Irma

[MtPockets]

Jake,
Thanks for asking. There is more information on Thread; Capt. AL No longer Dx with ALS? GET A 2ND. OPINION! Post number 25.
Here is the link for you: http://www.alsforums.com/forum/showthread.php?t=4824
I might be good to read the whole thread to get all the info, if you like.

Basically the third opinion, said I definitely have ALS. Since that time it has progress into my upper torso arms, hands, and neck muscles. I'm just a big bowl of quivering jello.

My family Doctor who I have used for years tried to talk me into going to Mayo, but I told him I am too far along now to be chasing rainbows. He put me back on home heath care this week, instead of hospice, which is good.

My fate is in the hands of the master.

Just wanted to update the changes that have occurred recently since Jake asked.

I am having fasciculations in my upper arms, neck, and hands. I also have noticed a decrease in my breathing ability especially when I try to cough. I aspirated some water while taking my meds and could not get enough wind to cough it back up.

On the positive side I can still talk fairly strong, still type, but getting symptoms like carpal tunnel in hands now from typing and yes I already wear the hand braces for that.

For the benefit of some of the new members, if you want to get to know me better go to my page at: http://www.myspace.com/als_bigal
There is also a cool song there that starts about ALS. "The Hero." Please go listen if nothing else.

[kevinw]

Capt. Al....I am sorry to hear of your recent upper body symptoms. I just wanted to send a quick note of how helpful and calming your past posts have been in different threads. I am sorry to hear the typing is becoming uncomfortable for you, I also enjoy reading your replies on different topics.

Bless you and your family, and I will visit your myspace page soon, but I feel I have a pretty good image of the kind of person you must be and you should be proud (you are very helpful here.

[DeeMichelle]

This is an unbelievable thread (tho' of course I believe) I am so shocked that you were told you did not have ALS only to be told again that you do! Your spirit and courage is fantastic. I love your My Space page gorgeous pictures of your family and yes a cool tune... Thank you for sharing so much and I think it's also you, Capt AL who pasted the poodle in the jungle gag? If I'm right my husband and child love that joke as do I. Thank you.
Dee

[sral]

Captain AL,

Maybe this 3rd opinion is wrong too! Your symptoms really do seem lower and your progression is relatively slow.

I know that the last thing you want to hear is that they could be wrong. Maybe my mom's attitude is best - - - she outright refuses to go see any neuro anymore. She won't even go for periodic checks.

Wishing you the best!

[JAKE]

Capt. Al,

Thanks so much for sharing the update with us on your condition. I was diagnosed in Nov. 2005 of having "probable" ALS by Dr. Stanley Appel. Considering I was having problems 2 years prior to that diagnosis, I feel that I am doing quite well. My problem is weakness in my arms and legs, along with muscle loss, but I haven't loss use of any of my limbs. My local neurologist felt as though I may have MMN, and gave me some IVIG treatments in Nov. of 2006. I showed little, if any improvement after the 2 series of treatments. A local internal medicine Dr. wants me to undergo cytoxin treatments for MMN, but I have to see a nerve/muscle specialist in Jackson Mississippi first to get him to recommend it since Jackson is the closest place to get it done. Capt. Al, God has given me a peace that surpasses all understanding, and I know by reading your articles that he has done the same for you. May God continue to hold you and your wife and family in the palm of his hands and bless you abundantly.

[Icanmanz]

Capt. Al, you are one great person. May God bless you. I know He is watching over you and your family. You and your family are in my prayers! God bless!


Irma

[MtPockets]

Thank you so much for your kind comments.

I have grown tired of the chase it until you name it game the Docs seem to want to play. I have peace about whatever I have and after 61 years of a blessed life, I am content to face whatever the future brings. I leave it all in the hands of my maker. His will be done.

[Icanmanz]

"I leave it all in the hands of my Maker", true words from a very courageous man that truly loves God, and holds nothing against our Father. Great respect to you, Capt. Al! God bless!

Irma

[DeeMichelle]

Absolute respect!

[patricia1]

Thats great!

Capt Al. I have been on a Dx rollercoaster as well I was told by my Dr I had Als I didnt have ALS and it drove me crazy. Because there is no real true test for ALS they are all clueless, I hope they are right about you . I will pray for you
pat 1

[MtPockets]

Your kind comments have lifted my spirits this morning. Just wanted to let you know and to Thank You.
http://i160.photobucket.com/albums/t172/ShakeyMarble/Animations/CrossGold.gif THIS IS MY LIFE.

[CindyM]

Sorry to hear about your upper body distress, Al. I hate this disease! :( Cindy

[fiddleplayer51]

Capt. AL,
I was unaware of the brief reprieve you received in March from your ALS diagnosis until this post.
I'm so sorry for the upper body progression and the decreased breathing ability you are now experiencing. You are such a peace-maker and I've noticed when there are misunderstandings between members of this forum and angry/unkind words are exchanged, you are able to offer just the right words to both sides. You're a diplomat and can open the eyes of each side to greater understanding. Thanks for all you contribute to the comfort and encouragement of others. You are also very welcoming to new members. I wish you inner strength as you notice changes in your condition during the coming weeks and months. All the best to your wife and family.
Take care,
Jane

[MtPockets]

I am always amazed at the kindness people on the forum have for complete strangers. Thank you just not seem to be enough to convey my heart felt thoughts.