I started out with neuropathy 19 years ago

August 29, 2008 at 1:12 am

Hi Dick! I started out with neuropathy 19 years ago but back then they diagnosed me with Lupus. The neuropathy part has always had a question mark in my records. It was mostly sensory back then but then moved to Motor/ Sensory but was demylinating with axonal degeneration. I went into remission and was doing fantastic for 3 years. Then I got hit by a car and injured my spine. Then something happened to my nervous system. When they did my last EMG they said CIDP of unknown etology.
I worry about my diagnoses them telling me there is nothing they can do! That is my biggest fear. An mine is still progressing and getting worse. Motor and sensory. Had a good day yesterday but today has been heck!
And then I worry about the medical bills! Wondering what this is going to cost me. I only have Medicare and no telling what I am going to owe Duke when they get done with me! Not cheap being sick! Not cheap at all!
So sorry you have been through all this with no answers. My last EMGv showed Severe Chronic Motor/Sensory Axonal Demylinating Polyneuropathy.
But I was never in alot of pain until June. Then the pain started. Alway’s had the numbness and tingling mess. Never pain like what I am dealing with now.
I feel for you! Really do! I have a feeling the damage with me is irreversible too! Meaning I will have to live with it! Easier said than done!
I feel for you! I really do! Just hope they find my cause! But hate to hear your bad news! Wishing you my best!