MtPockets
Very helpful member
- Joined
- Jun 1, 2006
- Messages
- 1,544
- Reason
- PALS
- Diagnosis
- 05/2006
- Country
- US
- State
- Ms
- City
- Gulfport
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.
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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