Quote:
Originally Posted by JB63
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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I don't know much of your history, but have they checked you for Sjogren's? Do you have dry mouth or eyes? Sjogren's can present with joint pain, raynauds, fatigue, etc. Even hypercoagulation can be associated with Sjogren's. Have they run blood tests...ANA & others?
Speaking of hypercoagulation, why do they say IVIG would kill you? I have antiphospholipid syndrome (so very much hypercoagulated) and received IVIG for years. What are saying is the root of the hypercoagulation? IVIG can be helpful with autoimmune neuropathies.
Hopefully you'll get more answers and find a suitable treatment. If your problems are autoimmune based, then there are a few new treatments out there (Rituxan, for one).
Sending some positive energy your way.