@brie87144 your experiences and condition are so very sad to hear about. First, I have to say, with your parental/family/work obligations, it is truly astounding that you have been able to hold it together despite feeling so awful, so long, with no clear diagnosis nor obvious path to recovery. I pray that you WILL find the help you need, and recommendations for next steps, and recovery. I noticed in your list of specialists consulted there was no mention of a TOP infectious disease specialist. Because your first symptoms began after a viral infection, I wonder if you might have 1) a RARE viral infection from the start, OR 2) a secondary infection set in after the first “infection,” causing the ensuing “pins” sensations, balance issues, bladder issues, and sensory and balance/stamina malfunctions.
If you could possibly have Lyme disease–or any infectious disease that is even more rare–maybe a TOP infectious disease specialist could help rule in or out causes, and recommend treatments. There are many many rare infections that can throw our systems into disarray. Here is a list of “rare” viral infections (seventeen pages of various types, with short descriptions, & links) https://rarediseases.info.nih.gov/search?Keyword=rare%20viral&page=1 This list might not be exhaustive. The same site provides a 72 page list of “rare bacterial” bacterial infections, short descriptions, and links to more info. https://rarediseases.info.nih.gov/search?Keyword=rare%20bacterial%20infections&page=1 Again, this list might not be exhaustive, but maybe you could copy/carry it to a consult with a TOP infectious disease specialist, to determine if ANY might be responsible for your symptoms, and if there might be a treatment that could help with a cure or at least improvement of your symptoms and quality of life.
I, too, am so sorry you are going through this, not only for the frustration, pain, sensory loss, risky balance/stamina and uncertainties you are experiencing, but also for your family who also probably feel helpless as to what to suggest. I will keep you in my prayers, and hope that helpful resolution is within reach. Please keep us posted.