Congratulations, Iglascoe! May I please ask, who is your neurologist?

I have this diagnosis as a severe case unresponsive to opioids (other than one that I cannot tolerate because it causes severe systemic edema) along with autonomic symptoms and two positive biopsies showing rapid atrophy of my IENFD in the lower dermis. Two Neuro-muscular specialists have written in my chart that I should receive IVIg, but neither is willing to write the script and deal with the scourge of our insurance system.

I have little bodily function and spend most of the day wearing a diaper, curled in a fetal position crying. I am hopeless, but I know that if I could just access treatment, I have a high chance of enough amelioration to have a meaningful quality of life and a future, a return to my career and a relationship. I am fairly young and have a college degree and have lived and worked in France and started teaching myself Italian, and now, after subacute onset at 31 and rapid decline... I am a mere shade of the man I was.

Any direction would be appreciated. Some doctor has to have compassion and look at the science and realize the risks are lower of attempting IVIg than fentanyl for decades and this condition with my autonomic system and sensory nerves. Heavy steroids could tell us something too, but that is risky business in our COVID world, and I feel IVIg would be safer despite the price’s being inflated due to greed.

Grateful for any leads! -Aaron