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MtPockets

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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.
 
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Icanmanz

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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

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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.
 
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Peg B

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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

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That is great news!
Were you diagnosed 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

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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

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Al,

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

CindyM

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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

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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

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capt al

i don't believe they diagnosed 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

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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

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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

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Awesome

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

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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.
 

Shatzie

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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.
 
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