Hi @kariulrich , I have been meaning to pm you for so long. Things have been crazy, of course with health stuff, not good stuff...haha. Diagnosed with Dysautonomia, but not sure exactly what. My allergist/immunologist is amazing. He thought mcas, and pots. did the tilt table test and according to mayo cardiologist, who I liked, said I passed. It was the worst. I felt horrible, almost passed out. My heart rate and blood pressure were all over the place. I don't understand. He did still say I have a POTS over lap, what ever that mean. My allergist said regardless this is not right. Been doing blood work and so much research that I have put the MALS on hold. I did go to my surgeon for the ultra sound follow up and the celiac is narrowing again. It is like 334 or something. I have had it much higher, but I noticed pain in my chest. My SMA however opened more. It is weird, it does that sometimes. It can be almost 50% and then it will open, and other times it was way over 70%velocity. Nothing with me is ever really 'normal'. We decided we would check again in 3 months. I have to much going on to see what is wrong with me with everything else. I am on iv hydration at home. 2 bags a day. It is starting to help now, it has been almost 2 months, but a rough start. Then upped to 2 bags. I just kind of retreat inward when it gets like this, nothing good to report you know. Got to get past this stuff and at least get a name to it. Dr. says it is dysautonomia, but that is so broad. I go to a great neurologist but Nov. 30. My dr is calling to see if he can get me in earlier. He says I have a lot of stuff going on. Oh and I have a golf ball size bump under my ribs, where I have a lot of scar tissue. It came out of know where and it is sore and hurts. I am going Thursday for ultra sound. I don't know what that could be. If it could be related to scar tissue, or maybe a hernia.
So I hope you are doing well. Loved your last article, but I know you saw my comment and we communicated a bit then. And great news for Robin!! I hope this is the last surgery for her and it stays well. I will stay in touch, and please do the same. I am bad lately. Well have a great week!!
Jil