Finally Going To Mayo!!!

[lorrie]

I tried over a year ago to get an appointment with Mayo Clinic in Rochester, MN but was unable to because the records my PCP had were so vague on my condition. They didn't know what department to start me in and said I really needed better records for them to decide where to start me.

Well, last January I found a POTS doctor from this site and was diagnosed last March with POTS. He has been a big help and has worked well with me, but in November I became very ill. My meds stopped working and I was passing out often and my pulse rate was staying very low. I was having terrible chest pain and could hardly walk across the room.

I went to my cardiologist and my POTS doctor and they both agreed my meds needed to be changed. My PCP also got more interested and decided he wanted to have me seen at Mayo. He is still skeptical of my diagnosis and wants a more firm diagnosis for me. I have struggled with symptoms for over 10 years.

My PCP had his office call Mayo and they got me in!!! I will go through the POTS clinic and will have extensive testing and will see some of the best doctors in the autonomic dysfunction field. I feel so hopeful that this will be my chance to get a firm diagnosis and some real help to feel better.

I am currently on a intermittent FMLA leave and have been unable to work since before Thanksgiving. I think this may be the answer I am looking for.

I have an appointment for March and can hardly wait. Does anyone have any experience with Mayo in Rochester? Has anyone been through their POTS clinic?

[firewatcher]

Hooray!!!!!!

I really hope they know their stuff and can help you.

Good Luck!

Jennifer

[lloppyllama]

Hey,

I live near Mayo in Roch, so that is where I go for all my non POTS stuff and my POTS treatment. I am in pediatrics, so mine is a different area than where you will be, but they all "preach" the same stuff. I don't want to make you worried about your appointment or make you think that it wont be successful, but I do want to "warn" you. I have talked to people who went there all excited about the possible new knowledge, and left disappointed because all they got was the same, high salt/fluids and exercise talk. The doctors at mayo are very bright and do know what they are talking about, but depending on where you are in your treatment, they really might not have anything more to tell you, unfortunately. I do think that its great that you are going though, because its important to make sure that the doctors have reviewed all their options for treatment. I hope that they know something that they think can help. Try not to lose high spirits no matter what the results of you appointment are!!! Best of luck!

Love,

-Mary

[lorrie]

Thanks Jennifer!!

I appreciate the input. I am going with the high hopes of getting new information, but also knowing that it might not happen. My insurance pays the cost, so I am looking at it as a mini vacation as well. I am staying in a nice hotel with an indoor heated pool and will enjoy that at night after a long day of testing and poking and probing.