To review the Amyloidosis the PET Scan and MRI are done. PET Scan finding FDG avid nodular air space opacity with surrounding ground glassing in the right lung lower lobes with enlarged Mediastinal 3.1*2.00cm & abdominal sub cm sized lymph nodes. Doctors suggest that the Lymphadenopathy might be due to Amyloidosis or may be some other infection. They will undertake the tests and further investigations. Any idea on cardiac and lymph nodes related problems due to Amyloidosis?

I would talk to your cardiologist. You probably already have and he probably told you about compression socks and an abdominal girdle. The girdle seemed to help me but I probably was using it even after I did not need to. I do not know about you but I recovered from complete orthostatic hypotension. I was hospitalized on 8-20-18 unable to stand more than 15-30 seconds without falling. By the end of October 2018 I could walk without any aid. I took Midodrine, Florinef (a blood pressure raising drug used off label) and a very expensive drug with no significant improvement. I also began getting multiple rounds of Chemotherapy early September for Al Amyloidosis during my 6 week stay in the hospital. I'm sorry but I'm not sure what it was that worked. I do not know what type of Amyloidosis you have or how bad your hypotension is. I hope this helps a little. If you have further questions be sure to ask🙂🙂

If you are asking how do we handle the orthostatic hypotension that my husband experiences as a result of the ATTR-CM, he took mididrone with little effect and has recently begun to take doxidopa with somewhat better effects. It still is very bad. And doxidopa is another of those very expensive new drugs that we can only get through a specialty pharmacy... Good luck with your hypotension.

What would you like to know Satish?