classygirl98

Does anyone know of a good physician in MO? It would be nice if they had some knowledge about autonomic dysfunction but not a requirement. Hubby is not going back to his previous doctor that he had before he went to Vanderbilt. Vandy said he needed to find a good doctor and they could contact them to get his records regarding his conditon. Debbie

Hubby was in Vanderbilt from May 1 to May 10. They diagnosed him with pure autonomic failure and ortho static hypotension. Is this the same as POTS? He had a really positive experience there. They told him his body did not make adrenalin. They have him on florinef and midodrin. Basically it was not the miracle cure we were expecting. They could not believe how he even attempts to work. They advised him to get on disability. At first he was really depressed about all of this but since he is home, he is doing ok. The nurses and doctors at Vandy were great. They gave him a report of his condition and ways to relieve the symptoms. After seven years we finally have some answers to this very puzzling disorder. Does anyone know of a good doctor in Missouri that he could go to as a general physician? He needs one and they can be in contact with Vandy regarding his condition. It does not matter where in MO. If I ever win the lottery, I am going to donate money to reseach this disorder. Maybe one day they will find a cure. Debbie

Another thing I want to comment on is the public eye. A lot of times hubby walks like his drunk and we all know he is not. Sometimes he completely passes out, sometimes he just has to stop and stoop down until he can get his bearings back. People just stare at him. I have never been embarrassed and have never offered an explanation unless of course they ask. How many of you had this happen? And how do you deal wtih this? Sorry for all of the questions. I am just happy to be able to discuss this with someone who knows and understands. Debbie

Thank you for all of the warm welcomes. All of our friends know he is sick and getting worse but it is hard for them to understand it all. It is nice to meet people that actually know what we are going through. I think this is just what we needed. I have noticed that with my husband there is no hurrying to do anything. He just has to take things one step at a time. It is hard for me because I am a hurry up and get it done kind of person. I am learning to be more patient and compassionate and try to understand what he is going through. He just used to be a very active person and it hurts me to see him not be able to do things that he used to do. He just wants to get better and get back to his normal self. Will this be possible? We ride horses so he can still do that, but there has been many a time he has to get off to keep from just about falling off. He does not want to give that up. So far that is the only thing that he enjoys that he can still do. Hunting is out of the question. Playing sports is out of the question. Please share your experiences with me. I would love to hear how you all deal with these and everyday living. Debbie

After seeing doctor after doctor and suffering with this condition for five years, we finally found Vanderbilt University in Tn. He is to admitted in May. I hope this is his road to recovery. He is going in the research program. Anyone here been there and done that? Would like input about what to expect and if they were helped. This is kind of our last hope. When I talked to his regular doctor about Vanderbilt he said yes that is where he needs to go, but why didn't he tell us this five years ago? After reading this forum it is nice to know we are not alone. I did not realize how many other people suffer from this. Is there hope for him? Can you live a normal life? I have learned much patience in helping my husband thru all of this. DK