Hi Kari, sorry it took me so long to get back to you. I have been busy with doctors and researching what that heck is wrong with me!!!Ha Ha. I am so sorry you are struggling with the pain again. I never had the problem of the weight loss. For my first surgery the doctor even said he wouldn't have suspected MALS because I wasn't loosing weight. I had always been skinny, but I had stomach problems for as long as I can remember so I think I just got used to it and adjusted. The energy is a huge factor. I am sorry.
I am still struggling as well. At my last vascular follow up my celiac velocity was up. It was 340 or around that. My numbers have been higher. My sma however decreased. I am weird. Nothing with me is normal. My SMA velocities go up and down. My celiac always seems to go up until some intervention. He said we could do a balloon again, but I thought we should wait. I have so much going on trying to figure out all this dysautonomia stuff. I have a "POTS overlap, whatever that is. My primary, who is amazing, says definitely dysautonomia and the pots is secondary to that and some mast cell issues. The problem is I have so many things going on there is no clear diagnosis except for MALS. I go back the end of Nov. for another ultra sound. I am not trying to be negative, but I will be shocked if it is the same or better. I am not sure what to do then. That will be the fifth time going in. I am still on the iv hydration at home. I do 2 liters a day, but I am still dehydrated. Nothing like I was though. I can't drink water. It makes me nauseous and hurts my stomach.
My daughter is getting married in June in Jamaica. Since we have no family and she always wanted to get married on the beach, why not. I am so scared I wont feel well. My goal is to be better, or at least able to just do the flight. We booked it so I have a few days of rest before the wedding. It is not a big fancy thing, but I want to be 100% for her. She was so close to my parents and I know it's killing me and must be her that they won't be there, I have to be strong. So that is my motivation.
Anyway, sorry I am going on. I hope you start feeling better. Is it your artery narrowing again, or the nerves or you don't know? I'm sorry. You are such a kind and giving person, you shouldn't have to keep dealing with this. I will be sending you some positive healing vibes. Take care.
Jill