Hi Friend! Since we emailed each other about the problems we had with doctors and went through so many trying to get diagnosed, I thought I would share this with you so you would not feel as if you were all alone! At least we can now have closure at what we both went through and got lucky to find a decent crew of doctors that are treating us now or waiting to be treated like me. Some are good while others became my nightmare. Just like what you went through.
That one lucky doctor is what made a change for me and saved my life! Same as with you! It’s strange how some people can get a diagnoses so quickly and get treated. Then others like me had to go over 5 years to get diagnosed and then after seeing one bad doctor telling me I no longer had Lupus anymore on just one visit has caused me to become so ill now and fighting for my life trying to get rediagnosed again so I can be placed on IVIG”S!
Funny after he claimed on my records I no longer had Lupus, how two weeks later after my surgery I landed with CIDP and had a positive Lupus Skin Biopsy! Duke will get it straightened out. And when they do! I plan on letting that doctor know what he put me through! Won’t sue him! But will let him know that he needs to listen to his patients and test them correctly so they don’t end up like me!
That is one reason I think I have my CIDP! Systemic Lupus with CNS Vasculitis, A Necrotizing Vascultis that shows up in skin biopsy’s and nerve biopsy’s! If I get that nerve biopsy and it shows the same as the skin. Then I had Lupus after all this entire time and it could have killed me or may still kill me because they are not treating the lupus properly. It’s a rare form of Lupus CIDP though! Wish me luck! Had fun talking to you in my emails!