Mayo long visits?

[DawnA]

I go to Mayo soon on the 14th. This time I am seeing neurology and my geneticist.

I am worried about neurology. I hear about all of these long visits and all of the testing. It is making me nervous. I am unable to stay for two weeks! I have noone to watch the kids when my husband works...we can not affrd for him to take time off.

I hope they do not make me repeat all of the testing like they have with many of you. If so I am going to have to do it in more than one visit. I wonder if they are going to want to do all of the autonomic testing over again. Dr Whiteman did not think it was necessary, but the neurologist may be different.

Why have your visits been so long? Was their a lot time between testing and appointments? I am only five hours away, so I can always go home for a few days. It will be interesting to see what happens at my next appointment. I am psyched up and ready to go!!

Dawn

[Guest GayleP]

Dawn,

I had to repeat tests but the good news was they got everything done the first week. If I had wanted other consults I would have had to stay the following week. Still I was able to See Dr Low, get all the testing done and get a cardio consult in 4 days.

Dr Low seemed mindful of the fact that most of us can't stay there for more than a week. Also, I called about a week before my appointment and someone in neurology was able to give me my schedule so I knew exactly what I'd be doing ahead of time. I was warned however that Dr Low could add stuff after he met with me.

Good luck.

[Merrill]

Dawn, can't they give you a schedule of appointments in advance of your visit? I've never been so I don't know ... but it would seem that they'd want to repeat most tests unless the ones that you had were done quite recently. Things can change for people like us rather quickly ... (And if you have had tests recently, then I'd wonder why you'd choose now to go to Mayo...)

Anyway, it's good that you live reasonably close; I'm sure you'll find a way to work your schedule. Sounds like you just need more information about what's ahead, and only a scheduler at Mayo can tell you that!

Good luck,

Merrill

[DawnA]

Thanks for the quick replies..I am still online. Thanks for the idea! I am going to call neurology and see if they have a schedule for me.

Merrill, the reason I am going to Mayo is that I am seeing a metabolic specialist up there. My dysautonomia, seems to be caused metabolic problem... possibly mitochondrail myopathy. I have neurological stuff other than POTS going on. I am seeing Dr Whiteman and he know his stuff when it comes to metabolic disease unlike my last Dr. It is such a relief to have someone that I feel confident in.

It is good to hear that they try and schedule everything in the first week. This brings me relief. I feel very fortunate to be soo close. I can always go back. I may be seeing a rheamatologist too.

Thanks again, dawn

[Ernie]

Hi Dawn,

I think Mayo does not test during the week-end so you could arrange to go home Friday night and come back for the next week. Also, you can wait for last minute cancelation to speed up your visit.

Ernie

[Miriam Poorman-Knox]

Hi Dawn,

Just returned from Mayo. They will give you a schedule, but each dr. adds more.

You will become a"checker" and no not at the grocery store. If an appointment isn't convienient you go to that dept. and give your info and wait to see if someone is late, doesn;t show up etccc I put 3 weeks into 2. Please take someone with you. The patient reps are very kind and if you can't get in sooner for something they will have the nurses ask what is convienient and schedule you.

Hugs-- Miriam

[avais1]

Hello!

Also, bring the actual test records with you. For example, I certainly did not want to repeat my brain MRI, my upper GI, nor my gastric series, so I brought the actual films with me. Mayo will reread them, but should not make you take the tests again. I used to work for Blue Cross, and we yelled at Mayo for running too many repeat tests. They are getting better, but the patient must be diligent in bringing their own records. Good luck!

[avais1]

One thing about my Mayo experiences is that I informed the scheduling desk, and Dr. Low, that whatever tests they needed to do was fine, but that I could only give them 2 days or I'd be fired from my job. I'm not sure how they did it, but they crammed all tests into those two days and got me back out the door. So for anyone else on a time constraint, give it a try.

[DawnA]

Thanks for all of the replies. I feel more at ease now. I will tell them that I am only able to stay three days! Neurology does not have a schedule for me since my main appointment is to the Dr Whiteman my geneticist. Neuro is just a consultation...however my POTS is no longer being controled by meds and a refferal to Dr Low would be nice.

I am looking forward to this appointment to learn more about my condition. I will let you all know. We learn sooo much from one another. Even though I am not able to respond or read all of the posts here. I love and appreciate everyone who posts here. We are all thrivers not just survivers.

Dawn A