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Old 01-09-2012, 01:49 PM #1
JB63 JB63 is offline
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Join Date: Jun 2011
Location: NY
Posts: 141
10 yr Member
JB63 JB63 is offline
Member
 
Join Date: Jun 2011
Location: NY
Posts: 141
10 yr Member
Shocked Missed you all..my update

I've been running around getting diagnoses. My motor neuopathy is now being diagnoses as Motor Neuron Disease, possible in Sept to be termed Progressive Motor Atrophy. All very bad news, but I've had some time to come to terms with it. My progression is not rapid, thankfully.

I have one last test, a nerve biopsy looking for inflamations. I started to show signs of lupus..swollen finger joint, pain in shoulders, raynaud's, hypercoagulation. If I am lucky, it will show in the biopsy and I will be treatable. But I am realistic, it is a long shot.

I learned that they cannot try IVIG due to the coagulation problems, it would probably kill me. I have to wait for the blood workup results.

I am going to an ALS clinic, they have so much to offer and the husband need more support than I do. I am on ritulek and have alot of preparing to do, but also I want to live my life not focusing on the future, not spending my days waiting to the other shoe to drop.

I am very religious and do not receive this as incurable, as I believe that by His stripes we are healed. I believe in supernatural healing. This above all else is what helps me.
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