Hi, Hopeful... Who is feeling a "Bit Down." I so get it. I really try to hang onto my Hope... hope in healing, hope rooted in faith. I have had two biopsies that fall within normal density range but show mild/moderate axonal swelling that has "unclear clinical significance." I have posted about my situation before: a bad viral illness years ago and the sudden onset of body-wide neuropathy. I've seen numerous top-notch specialists from different specialties to address the various manifestations of what they think are "immune mediated" symptoms. What caught my eye with your post is the mention that they think "probably" Sjogrens. In your case, what has lead the doctors to say probably and not render a more definitive diagnosis? I have recently been diagnosed with severe dry eye in both eyes and have severe dry nose and throat. The antibodies, however, are negative for Sjogrens. I have been on Gabapentin and 10 mg. of Nortriptyline daily for two years, and I know both can cause dry mouth, etc., but I only recently began with the dryness, so I'm concerned/ suspicious of a developing auto-immune condition. I know a lip biopsy can be performed to absolutely rule this out, but I've read they're miserable. Have you considered it? If not, why?
When I first became ill, I looked to the day when I would be well again and could continue on with life as I knew it could be. Looking back, I knew in my heart something had forever changed but I was HOPEFUL that I was wrong. Now, I am adjusting to my "new normal" and trying my best not to let my health challenges rob yet another part of me, of my life. So, at the end of another day, just being able to say "I DID IT!" has to be enough. Don't lose hope! Maybe, just alter what you're "hopeful" for.