Preparing For Mayo Clinic - How?

[comfortzone]

Hi everyone...

I have an upcoming appt. with a doc at the Scottsdale Mayo clinic who is a neurologist - a Dr. Goodman I believe and I'm wondering how to prepare for it. My doctors are glad I'm going because they say,"we don't know what to do with you or how to best treat you"... What they are treating.......

In a short form - I had a ton of tests over 2 years time to figure out why I'm stiff and painful with activity intolerance, have widely fluctuating blood pressures, run tachy most the time, respond weird to beta blockers tried for slowing my heart rate and helping the bp. All began about 2 years ago after bilat knee replacements...

We've gotten so far Hypermobility Syndrome -- and what seems to be -- the frequently encountered dysautonomia type symptoms.

The scheduling woman said to bring discs or films I have......well I've had an MRI of the neck and the L/S spine -- would those be good to send? I've had one of the shoulder too but I don't think it will help. I've got some copies of EMG's of my arm's and legs too from a year ago.

Tons of labs -- but really I don't want to complicate things. My labs for 2 years were seeking for something wrong -- Nothing was ever wrong. Even this years normal labs were good once again....

I recently had a stress echo, a regular echo, 24 hour holter and notes from my cardiologist visits over the last couple months. I'm seeing a neuro doctor for ANS issues -- will he look at my cardiac stuff?

I have notes from two other neuro consults -- but they don't look great -- meaning the one guy at a university said he thought my weakness would be helped by seeing a psychologist. Then the local one said go see a psychiatrist to prove that guy is wrong. I went to my primary and she said to just ignore them --- she knows I'm quite sane.

So I don't want to have a doctor pre-judge me by what they wrote -- yet they are neuro -- and this Dr. Goodman is neuro.

My hope is to get testing to prove out my best guess. That I have dysautomia linked to Hypermobility Syndrome or EDS-HM as some docs call it the same now.

Then if the testing is proving it -- then I can get adequate treatment.

What tests will Dr. Goodman want to see? What tests should I expect him to order? I would think a tilt-table test would be very beneficial as I'm at home able to get orthostatic hypertension readings ? But I'm new to all this...

I got way too low bp on the new beta blocker Byastole -- So I'm not taking it == only took one pill and was low for 4 days -- Now I'm way too high again and feel like crap .... I wish I could feel better....

ANY help would be appreciated. I'm anxious about this and want to make this easy for me and for the good doc....

[potsgirl]

Nowwhat,

Sorry I can't type a long message, but my hands are really hurting today.

I've seen Dr. Goodman before, both in Scottsdale and at the Rochester, MN clinic, and he is a great guy. I would just bring your most current tests, the last blood work they did, the last echo, etc. Mayo is big on repeating tests that you may have already had done, because they want the newest info and trust their doctors more to interpret them correctly. Dr. Goodman is a specialist in POTS/dysautonomia, but he may well send you to other doctors as needed. For instance, I saw a cardiologist when I was there, because I have heart issues, too. That's the beauty of the Mayo system...they can schedule you to see other doctors and do certain testing once they see you and your records, and usually within a day or two. Make sure you keep your schedule open, because you may be there for a week or more.

Have you been scheduled for any tests yet? It would have come with your paperwork. If not, you can be almost positive that you'll be scheduled for some once you get there. I ended up staying for 10 days when I went to Rochester, but it was also over a weekend, and one of my tests I had to wait a couple of days on. You can always go to the department where your next appointment/test is and wait for an opening. They're great at trying to work you in. I had a sweat test, a urine test, blood work, a CT scan, etc. What you experience will depend on your particular needs.

If you're not familiar with hotels in the area, you can PM me. A lot of hotels have special rates and shuttles to the clinic. If your appointment is soon, you're lucky. Hotel rates take a nosedive in Phoenix during the summer, since it's so hot. It was 115 there yesterday! I'm in Tucson, so let me know if I can help.

Cheers,

Jana

[comfortzone]

Thanks so much for your timely reply.....it's truly been me trying to figure all this out and my doctors nodding they agree this is what's going on - pots type stuff. So I'm glad to hear that he's familiar with this sort of thing....I've got that hypermobility syndrome which is probably why I have the symptoms - well they are linked in studies anyway. I think I will get a one way ticket - and Hotwire a room for one night before my appt. and one night after only -- That way if he has no desire to test etc.. I'll just fly home right away. If he would like tests etc. Then I'll Hotwire either the same hotel or another as I do notice there's lots of options at good rates now for sure = for the week or however long he believes it will take. I'm glad you explained things to me! Sounds like a cat-sitter may be in order (she's not gonna like that - poor kitty)

I've not been scheduled for any tests - but I think that might be because the scheduler took brief info over the phone and she said, 'oh with your insurance you don't need a referral' - though all my docs are willing to write one. When I mentioned EDS - she almost cancelled me! She said, "we don't treat that" -- I said please don't misunderstand - I was merely giving you a history as to why I have supposed dysautonomia - wow I almost blew it!

Anyway I am anxious because I'm not sure she understood what I was trying to say....as regards my symptoms and my history. Hence no tests ordered or scheduled ahead of time -- Well tomorrow I'll try to collect records and send them to her as quickly as possible. Most everything done so far was to address figuring out the EDS part of it -- then some cardiology stuff as my vitals are wacky and I have exercise intolerance I guess....

I LOVE Arizona ~ I'm really lucky Mayo is there.......Yepper it's WAY hot.... Maybe by mid Aug it'll cool down..... I know dream on..lol

thanx again!

[houswoea]

Thanks for asking this question! I have my first appointment soon too, but in MN and I've been wondering what to bring with me. On the paper it just said anything that pertains to your condition... so then I just decided it would be best to just bring it all.

Do you have any anxiety/ psychological things? I ask because I saw a psychologist to make sure I wasn't just making it up and I don't know if I should bring my records or not. My worst fear is being sent away before they really get to helping me! I can see you feel that way too, with the EDS comment and all

Also, if I've had like 5 chest xrays in the past eight months, should I get all of them? Or just the most recent one? That was the test of choice I guess!

Liz

[maggie]

I had my tests done at Mayo, Jacksonville, and I brought copies from every doctor I saw when I started to have symptoms. In fact I had to wear a heart monitor for 40 days and they didn't include that info. Mayo was on the phone to that doctor and stated they had better send those results over right there and then. I had so many misdiagnoses, but they wanted to see all the information that I had. It can't hurt to bring what you have. The doctors there will sift through what they need and what they don't. They can use some of those old tests to compare with the new tests that they will run. Better to come over prepared then under, just my thoughts. Good luck on your visit I hope they will be able to help you.

Maggie

[comfortzone]

Is Mayo used to patients being misdiagnosed? I hope they are sympathetic to patients who were touted as needing psychological assistance to push through fatigue.... Having been burned by that -- only to find I have true issues with vital signs that are seemingly dysautonomia manifestations from hypermobility syndrome - I'm pretty sure I'm going to hand carry the records that may play against my work-up's possibilities through doctor's bias and if at any point in time it seems necessary I can pull them out in person.

I was told to FAX and mail everything ahead of time -- wondering if I should have my doctor write a summary of what's going on so the Mayo doc has someone of his league to bounce things off of. I made the appt. and was told I didn't need a referral - while all of my docs want me to go there - I have nothing summed up by any of them as the scheduler said it wasn't needed.

If all of your films were done at the same place - maybe they could put them all on one disk for you? I know my mri's from a couple years ago are being put on disk now as well as a head CT from the ER a week or so ago. The MRI's were neck and lumbar spine. I'm not sure I want to include any local neuro notes in what I fax over -- they have been the least helpful of any discipline thus far.........yet it's neuro who I am going to see soon.......

Got accomodations for only 33 dollars a night in Scottsdale -- truly lucked out and the place has a substantial made to order breakfast and a free Happy Hour nightly..... <---- Will I need that? LOL!

[issie]

I recently did Mayo in AZ for the second time. I personally, wouldn't bring anything that suggest it is "in your head". It really does seem to play a part in how they look at you. I had a horrible neurologist there. I'm glad you got one that believes there is a thing called "POTS". Maybe he will straighten out that 'lady'? They scan your records into the computer system and every doctor there has access to whatever you bring and have included. They will probably repeat every test you've had, they want their own data. I was there the first time 3 weeks, the second time 1 week. Bring a list of all the drugs and/or supplements you take. Nearly every doctor ask for that. Be sure, if you need a chair to get one when you go inside the door. They will have people push you around if you are by yourself. There is a bus that will shuttle you between the hospital and the clinic, because you will probably be in both places. Like was told earlier, you can, if you have free time between doctors, do a stand by. If no one shows up for one of your appts., you can get in early. Be sure and tell the schedulers that you are from out of town and they need to crunch your appts. They will try their best to schedule you. You can keep going back to scheduling to see if an opening has come up for one of your appts to be moved. Good Luck, Hun. Let us know how you liked the doctor and if you found it helpful to you. Enjoy Phoenix --- it's so hot here right now --- 118 today. Be sure to carry a water bottle everywhere with you and take time to drink it. The food is good in the cafeteria too.

[nmorgen]

Hi,

I just wanted to add my experience with MAYO. As far as records I don't think that I would take anything that suggested psychological issues. I was lucky and my neuro actually thought I had POTs from doing a poor man's ttt. I had current brain MRIs done, but they didn't want them on disc, they wanted the actual MRI films so that their doc could interpret themselves. I would make sure they will accept the CD or if you need to have the actual films. They do like to do their own tests and have their own people look at things. I wasn't scheduled for any tests until I got there and then it was just bouncing from one dr to the next and test after test. They did give me an estimate on the time it would take, but I ended up having to go twice as they couldn't get everything done in the first week. All of the drs I saw were very caring and they spend a lot of time with you, not the standard 15-20 min. I was very relieved going to MAYO as I felt they were really trying to help me. Unfortunately I moved out of the country before I was able to see the specialists for treatment after I had all of my diagnosises(is that a word? lol). Good luck and I hope you are able to get some answers and help.