first entry
I am glad to have found this place. It feels very healing to read everyone's stories. Its extremely validating to hear experiences similar to my own. To realize I'm not alone. Not making all these symptoms up, not just a complainer or hypochondriac, as people who don't understand this awful disease sometimes seem to imply. Its validating to relate to others and hopefully I can add a few things that others can relate to, empathize with, find validating. And in this way, we help eachother heal, emotionally. having a disease like this can be very isolating. It has robbed me of a once active social life. I am definitely a people person, and I believe we all need interaction with others to grow and heal. So I'm glad this board is here. I hope to make it an active daily part of my healing process.
Replies
Been on a dx roller coaster. Dismayed that each specialist is more confident than the last that previous dx were wrong. 8 dx in 5 months from 6 specialists. Have made my own dx....theyre all grossly under informed and overly arrogant. I\'ve been trying vitamins and supplements and feel much much better. Many symptoms of the 8 dx resolved or diminished. But as symptoms and flares come and go, I\'m not making a dx just yet. Time will tell. Why are these specialists allowed to behave like this? Its dangerous.
Oh, I totally know what you mean about Dr\'s acting so arrogant. I was extremely lucky that my actual GP listened to my symptoms and consulted a Neurologist, then told me to get a lumbar puncture, because he suspected GBS. But since he is at an \"Urgent Care\" clinic, I had to suffer 3 other doctors and 2 previous visits to the ER before I was admitted and given the IV-IG treatments that helped me. In the meantime, I dealt with misdiagnosis,and having to repeat my symptoms over and over to all of them till I just wanted to curl up and die somewhere. One Dr.. told me that I was hyperventilating and I should breathe into a paper bag!