Quote:
Originally Posted by heb1212
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 wbiopsy 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 esomething 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. 
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Hi,
I love the way you put how you are adjusting to your new normal. I am trying to do the same. Just every now and then it gets to me.
I'll be honest my head knows my life has changed forever but my heart and faith tell me you never know.
You sound very much like me. In the past doctors have told me that I may have caught a virus or bacterial infx that started all this. I was in China and Mexico shortly before this all started. I remember being sick when I returned from China. I also have full body neuropathy. All but the left side of my face.
As for the Sjogrens, I had the eye test and it was positive. Barely no fluid. I also had the lip biopsy. It was negative. I had it at Hopkins and was told I could still have Sjogrens. They said the lip biopsy depends on the gland they chose to take. One may be positive and one may not. Hopkins told me my bloodworm may show positive later.
I neuro here believes that Hopkins is right and it is Sjogrens. That's what he believe is causing my muscle weakness.
Thanks for your words of encouragement.