@steveandsteph Please feel free to reach out at any time. I have navigated this disease for over 2 years and our teaching hospital told me I have the most diverse case they have seen. I have learned much through trial and error because they don't even think to tell you about some of the dangers of the treatments or your body.

If I could know one thing a long time ago it would be to be vigilant of your body. Any changes might be related to LP and the sooner you get it treated, the less damage it might do to your body, e.g. hair, nails, toenails, private areas, eyes, lips, ears, nose. You get the picture. Because I am so weird and notice every little chance I will most likely keep my vision, fingernails and 1/3 of my hair. I am lucky compared to others. In a year or two I might have lost all of these but at least I have them now.