Quote:
Originally Posted by RichgotsSFN
I see no one has added to this post in awhile. How is your breathing have you figured anything out yet?
I have small fiber neuropathy and dysautonomia. I have the same breathing issues as you. No wheezing, no coughing and I'm convinced its from the small fiber neuropathy, namely autonomic neuropathy or the lungs. I'm also getting evaluated for sjogren's by one of the most top Ss doctors. And he said first blood tests, then saliva gland ultra scan, then eye test for dryness in a special way, then lip biopsy if two of the 3 tests dont come back positive.
The main thing is to get insurance to cover strong IVIG treatments. Thats the only thing that can restore nerve fibers quickly enough. Idk how affective it is with lung neuropathy. Also I dont think lung neuropathy shows up on typical lung biopsies or scans. i had all the scan just not the biopsy yet, im too nervous for it.. How was your lung biopsy?
I also suspect sarcoidosis too is not SS. i have very dry mouth and need to drink water all day long. But it could be from sympathetic overdrive... Tried to private message u but im new here and dont know how..
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Im still SOB. Right now the findings in my lungs are : Mycobacterium Avium, mixed COPD and Restrictive. Im on antibiotics. However, the doctor feels that I should still be monitored for the autoimmune disease because of the restrictive component. He said that the infected area (as of June 2012 CT scan - I am due for another CT scan 1st week this April) should not give me the SOB. But, I had comprehensive autoimmune tests, but its all normal. I still have dry eyes and mouth. I dont know if the inhaler causes the mouth to dry more :-)
With my nerves, I still have the same pain. But, my skin biopsy last Feb 2012 showed normal results! Im taking Gabapentin 600mg 3x a day. As most posters here will say, the medication does not help the pain, but for me it weans the edge of the pain. I was tested for Sarcoidosis, it was normal.
I understand that lip biopsy is the gold standard to diagnose the SS, but for now, I decided not to go through it. I have to prioritize the infection.
Have you had a Pulmonary Function Test? Have you seen a pulmonologist or a cardiologist? Please see one....
Have you been diagnosed with lung neuropathy?
03-18-2013, 08:58 AM
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