Thank you. Wow, you have a lot of really intense symptoms…. I do believe there is some connection. MALS is a disruption in blood flow to the stomach and major organs. How can it not cause problems???? That is my thinking.
I think in my case, maybe MALS didn't cause dysautonomia directly. Definitely SIBO, and some stomach issues. The reason I say this is because I was really doing well. I didn't really have any POTS symptoms. My surgery was Feb. and I felt I would have been ready to go back to teaching in Aug. I was going out in May for my kids graduations, one college, one high school and events like that. Now there is no way I can even think of it. My son is graduating from ASU in Dec. I don't know how I am going to do it, but I will. My daughter graduated from there in May 2014. I did it. It was a long day for me, but I can't even imagine walking what I had to for hers. Thank goodness his will be inside. 4 yrs later, 100% worse, but not MALS only.
I only learned about POTS, and MCAS on a Face Book group, MALS PALS, and MALS Awareness. I had never heard of these. When I described how I was feeling people were saying to check into those. I did and was like, omg, that is me. A lot of the symptoms overlap as well so that sometimes makes it difficult. Plus there may be symptoms you might not even think of to mention, and they are listed in POTS, or MCAS symptoms, and that could help with diagnosis.
My ANA test was neg. and so was some others they did. That is what confuses me about dysautonomia, but I guess that doesn't matter. I would definitely consult a cardiologist about POTS. Do some research on POTS, that may help you when you go to dr and explain why you believe so. A neurologist also deals with POTS. You should try to find someone who is somewhat knowledgeable of POTS, but they may be hard. I would go to the appt. with everything you have done so far and a symptom list.
I am so happy to know that I have helped you in any way. It is Paying it forward, for sure!
Good luck and any questions just ask. If I don't get back right away, I may be busy with drs or just vegging for a bit, but I will.
Hang in there,