NeuroTalk Support Groups - Missed you all..my update

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Quote:

Originally Posted by en bloc (Post 839742)

I did not have an aCL done either. Will dicuss with her after I see hemo doc. Thanks for giving me this info. It really is helpful to me.:D

Quote:

Originally Posted by JB63 (Post 839342)

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.

I really hope and pray for a good outcome for you. I too believe in spiritual healing and the power of love and positive thinking on the body. We must never loose faith. As hard and as difficult as it is to cope and live with what affliction we have, we must always hope for the better.

Quote:

Originally Posted by en bloc (Post 839742)

You might also look to see if they ran an aCL (anticardiolipins) to see if you have APS (antiphospholipid syndrome). It's an autoimmune clotting disorder that could explain your hypercoagulated state.

I don't think there is anything that Sjogren's doesn't attack. I have ganglionitis/ganglioneuropathy from Sjogren's as well as numerous other areas & organs that have been effected. Sjogren's can be far more complex then many (even doctors) realize.

Maybe they will reconsider the IVIG after seeing the results of your nerve/muscle biopsy.

Best of luck with the biopsies. Please keep us posted.

The aCL's were negative, but my hemo repeated them. The conclusion was "The presence of a Lupus inhibitor can't be excluded and suggest repeat evaluation when effects of warfarin are not present.

My drVVT and anti beta glycoprotein1 Iga and factor VIII were elevated.

Quote:

Originally Posted by JB63 (Post 842132)

Never hurts to repeat them. aCL levels can be strange....sometimes pos., sometimes neg (even after patients diagnosed with APS). In fact, for a diagnosis of APS, you need 2 positive aCL levels at least 6 weeks apart...plus a thrombotic event (which you already have). Being that you have other factors, it's good that he's checking them again.