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Need Mayo Input Quick, Please!


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Okay, they called and said the mixed meal test can be scheduled---in TWO weeks!! Then, they said the neuro can see me in APRIL!! What's going on??? I am getting the feeling they are trying to get me to tuck my tail between my legs and go home. :( Is this normal wait time(two weeks) or are they trying to boot me out?

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I don't think anyone can tell you for sure - except the Mayo Clinic themselves, but I know there is quite a wait time to see a neurologist unless it's a major issue. If you have to travel to get there, you do have the option of telling them that you need all the tests scheduled in the same week if possible. Which Mayo are you going to?

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I'm at Mayo--Florida. I'm sitting in a hotel waiting it all out. Obviously I'm going to NOT take that appt. with the neuro in April. They wanted me to have an EKG and some neuro test tomorrow, but those are not necessities to me, so will cancel them. I thought when they knew I was from out of state and wanting me to see these other specialists, I thought they meant while I was here testing in general! I didn't think for a minute that they would spread this out over weeks and months.

I am really getting a feeling they are just trying to get me to leave.

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No, that is their wait time. If you schedule all of these appointments ahead of time, you can squeeze them into one trip. Otherwise they give you 1st available. They sometimes take standbys so you could try that or just do another trip in a few months where you get all these apps at once. Sorry you r dealing with this. :(

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We had some luck with going to the actual department where the testing was being done and seeing if they could fit me in on that day. That's also how I was able to see my Mayo doc for an unscheduled visit before we left Rochester. We waited in his waiting room all day and he saw me at 5:30pm. It's better than having to travel again.

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You can also do standby. You can get your name on a list and if someone doesn't show up 15 min. after their time, they will give it to you. If you bug them allot - they will try harder to get you in too. And you need to call the dept. that you're trying to get into - not just the scheduling office. That will get more results. Only, you might have to take different doctors with standby. If you make sure that you call scheduling and tell them you are from out of town and you have from this day to this day to do it all - they will try harder. You have to stay on top of it. Don't get discouraged - learning the Mayo machine takes a little time - but, it is well oiled and runs very well. You just have to learn how to operate it. Hang in there - it's very stressful - but, you're strong and you can do it.

Issie

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Issie, I'm sure I'm on the whole endocrine dept.'s "avoid her call" list today!! I've been all over trying to get things either soon or my return in April. So, I won't wait for two weeks to do the mixed-meal test, I'll do it when I come back in April.

Thankful, I was going to go sit in the cardio's office, but he's not there tomorrow. I'll just wait until April.

Tomorrow:

---EKG

---Autonomic Reflex Testing

---EKG again(I have no idea why)

And guess what? I can only eat a light breakfast and apparently nothing until noon. IF I as at home, that would be a guarantee low blood sugar, so I may not need that mixed meal test later on after all!!! I will most likely get hypo mid-morning, and I just hope that there can be someone to do labs on my within a few minutes to catch the numbers. I guess I will be bold enough to ask if they know to draw labs if I go low, and if they know which ones. I don't want to waste a hypo!!

InApril:

---see the Neurologist

---see the Cardiologist, and it is with Dr. Kusumoto

---mixed meal test

---follow up with Endocrinologist

So, everything will work out. Just in two visits and another loooong drive.

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Sorry that you have to make that trip again. The good news is that hotels may be cheaper after the winter. Appointments should be easier in a few months when the snowbirds leave.

I would urge you to try to get them to schedule all your tests and appointments now that you know what you need in a block whether it be a month from now or 2 months. More than likely you will need even a few more days after the few for which they have scheduled the appointments. You should probably allow about 7-10 days for your next visit, realistically speaking. That's what they tell you in Rochester and I think that is what they say in Jacksonville. Sometimes it's a matter as to how well your referring doctor has prepared the doctor you are seeing at the Mayo for your problems. If your referring doctor was concerned with the hypoglycemia and not the dysautonomic, that may be the reason the other appointments were not scheduled.

I don't think they are picking on you. They do their best to compactly schedule appointments. Its actually computers doing all the scheduling, not people. The computer tries to fit as many as it can in.

This time of the year--winter--Jacksonville Mayo is really busy--even for people like us who are "regulars" and use Mayo for all our medical needs. You are dealing with all the snowbirds who are in Florida and Georgia for the winter. There are a limited number of doctors and appointments.

Like I said, I would wait for Dr. K, not for the neurologist. With the neurologist, he will schedule you for a tilt table test. I do not know whether they do the sweat test in JAX. And then, propose the usual cocktails..midodrine, florinef. and later possible Mestinon. He follows Dr. Lowe's protocol. When I saw him a few years ago when I moved to Florida, he even commented that I seemed to know alot since I had already been to Rochester in 98 and had seen Dr. Grubb.

It was only by accident that I found Dr. Kusumoto and that was because of my pacer. I learned during that visit with him that he was really interested in POTS and seemed very creative in his approach to it. Like I said before, his nurse practioner is very knowledgeable as well.

Stand-by is sometimes helpful for some tests but not often.

Summertime they are usually less busy because of the heat.

Be patient. I hate to throw water on the fire. But, no one really has an answer to the POTS problem. It is really a trial and error approach. See what works best. You can only be patient when trying things because you need to know how you react to each thing.

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I wonder if you would have more luck going to Rochester, MN, where they have the autonomic specialty department. I got in and over a week's time had all of my tests done. It's like they put you on a 'fast-track', especially when they know you're not from there. I went from Tucson, AZ to MN, and it was well worth it. We did fly in, however.

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Glad you seem to have it worked out. When you see Dr. Kusumoto, give him my regards. My real name is Lois. I'm the one who got the Biotronik and had to have the St. Jude taken out of my abdomen and the Biotronik put back where a pacer once had been in my right upper side. As he told me later, I threw him alot of punches. All told, the surgery took him about 7 hours.

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Wow! I didn't realize how "lucky" I was!!!! I live about an from Mayo in Rochester and my home hospital admitted because of some organ dysfunction- so I was admitted thru the ER. Of course that meant I was inpatient- ugh- but they sent me via their their ambulance company to get to get the autonomic testing. I was there for a while but if you are really sick, maybe try that?

Maybe I was lucky but I'd think most of us would qualify admission on a bad day. I think I was there close to 2 weeks in December.

Jen

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