Call From Mayo

[plaxico6]

I was at Mayo in Rochester in June of 08. At that time I was diagnosed with POTS. My main problem was extreme nausea that I have now been dealing with for 2 and a half years. After leaving with this DX I was hoping the meds and recommendations would make me functional. But it hasn't! I am still dealing with the nausea but at least I am getting nutrition with my feeding tube. I had sent my neurologist and autonomic neurologist a letter asking for some more help. All they had to offer was another anti nausea med and it didn't work. They said thAt was all they had to offer. About a month ago I also sent out a letter to my initial Internal Medicine doctor I saw there at Mayo. Well he called Thursday to check on me and was so compassionate! He himself called and asked if I would be willing to come back! He said that is not the way Mayo wants the outcome of patients to be. At first I was hesitant but now after thinking about it I'm ready to go. I just am so scared of being let down again. But then Friday Vanderbilt called and I have a appointment there June 10. Wow just what I needed. Hopefully I can get some function from these great treatment centers. So I'm asking if you guys will include me in your prayers. I believe the Lord will guide me where I need to go. He has been with me throughout all of this and I know he will show me and be with me always. I am very excited but somewhat reserved. Stacy

[Bella127]

Stacy,

I sent you a private message.

Chrissy

[janiedelite]

You've posted for awhile now about your nausea and problems eating. I'll certainly pray with you that these docs will know what to do. I'm glad you have more hope now. My husband and I are praying that Mayo will have answers for us next week when I go there, too. Janie

[ana_22]

ill def be praying & hoping you will get some relief, i know how awful constant nausea is. hugs, xxx

[juliegee]

I'll join everyone in praying for you. I have an idea of what may be going on. I've been through this & so has my son. It is very common for digestion to be delayed with autonomic dysfunctions. Have you had a gastric emptying study? They check for gastroparesis or delayed emptying of the stomach. Regardless, they are not necessarily accurate, are quite unstandardized, and only provide a "snapshot" of what your tum is doing at that moment. My son passed his with flying colors despite the fact that he couldn't even eat his radioactive muffin w/o vomiting. He was only able to sip some radioactive juice. My son ending up seeing a GI motility specialist at Johns Hopkins because he lived with chronic nausea & like you we couldn't get to the bottom of it. They did a test called an antroduodenal manometry that checked to see how his small bowel was functioning- it wasn't. He had long periods of retrograde movement, where his food was actually comin up instead of down. Your GI tract is like a stream, and a dam in the stream can cause delayed motility, nausea, and vomiting. My son was put on a GI prokinetic, something for acid (that always backs up with any GI delay), and, of course, anti-nausea meds. He was also treated for his underlying autonomic dysfunction with florinef, salt, lexapro, etc. This combo, with some lifestyle changes, has helped him to achieve some level of normalcy.

Please be sure the docs at Mayo look into delayed GI motility and check both your tum and small bowel. You're not 18 y/o or under by any chance? If so, I have great recommendations for docs at Johns Hopkins that specialize in putting all of this together.

I'm praying for YOU!

Julie