I feel that my husband is somewhat in denial about whats going on . I have always not trusted what people say in the medical field. But i'm telling you things have been very strange lately. Just like I said this is all true! I know it's hard for him to constantly going to doctors visits,procedures, ect., Its all we do. And I feel we are getting knowhere.
I not even sure I explained everything. After having a pouchoscopy on the j-pouch, the third counting back form the most recent of this year. Strange things were happening. My husband felt like I had a mini stroke. I all the sudden began to be very confused, not remembering where i had put things, not being able to hold and understand a adult conversation. Although things are improving a little i still have like "dumb moments". I never shared this with him but as we were coming home last night we had just got off the expressway and didn't know where i was for a split second. This is very scary to say the least!
Anyways shortly after the scope I went in to my follow-up visit with my gastro doctor and he said that I seemed very confused. To be honest It was the first appointment of the day, I got little sleep, and really only had time for a banana. To me it seems strange to me that a gastro doc would notice any neural logical problem and told me he didn't want to see me back until i had all the testing from this brain doctor. I thought It was strange but had all the testing MRI, EKG, Spinal Tap, and tons of Blood work even went to see a psychologist for several hours of testing Identifying things. After all the testing which i'm sure costed thousands everything showed up normal. from the beginning I was told it could be from being malnourished all my live to now not being to properly digest foods and a vitamin deficiency. that they said if its all it is the severe atrophy would come back but takes a lot of work. But will come back.
I really think this all happened from the scope that was done, would that be possible? This is when all of this confusion stuff started to happen. then I thought it was the TPN, I discontinued the Entyvio thinking it was this because it can cause PML a severe brain infection. I have done research after research from this and its not the TPN, could still be from Entyvio but was tested for that and it's negative. It has to be the scope and what happened in that room, I don't know cause was out. what I have come to is this place has all these interns all the time and who know while being under my doctor could have let one of the learning students work on me. Although i have noway to prove this happened and every time you have a pouchoscopy you sign a consent form although who knows what it reads they give to you when your in the procedure room right before they put you under. I think they should have you sign right when you get there for your procedure even before you undress.
I need a second opinion but who and need to get the hell out of this place before they truly kill me. And this place is supposed to be the best hospital and care in the state or even nation. like you said I getting the run around and for some reason stringing things like procedure after procedure with no result!