Nerves About Appointment- New Member

[Cskjeie]

Hello Everyone-

I'm new to the forum, this is my first post! I'm so excited I have found this place with so much information and helpful members.

Recently, I was diagnosed in a very small clinic with POTS, after taking my BP and HR laying on the exam table, then sitting up, then standing, the doctor made it like seem like no big deal- oh you have POTS, that's all. I feel very blessed after reading some forums here my symptoms seem to be mild compared to others, but I'm far from leading an average life.

I am now being referred to the Mayo POTS clinic in Rochester, MN, to confirm the diagnosis. I got the packet in the mail today and I'm so nervous. FOUR DAYS of testing? How in the world am I going to make it?! Has anyone ever gone through this? Is this normal? This seems like so much and honesty I'm so scared to go. Anyone have any advice?

My appointment isn't until the end of July, so I've got two more months of freaking myself out over this....

Here is the breakdown:

blood tests

chest x ray

urine sample

POTS Education

Nurse visit

Consultation

Autonomic test

Electrocardiogram

24hr Holter & BP placement

Echocardiogram

Endocrine test

Sweat test (this sounds HORRIBLE)

Acupuncturist

Relaxation technique education

Pulmonary test

Exercise test

[SarahA33]

Hi, Csjkeie,

I went to the Cleveland Clinic rather than mayo but they sound similar. The only thing missing that was on my itinerary was a blood volume and hemodynamics test... but it sounds as thought they have you pretty packed pull! Be thankful that you;ve gotten into a superb place like Mayo as some patients have recently come back to report that they'e been denied!

Who are you seeing there? You'll hopefully have some answers at the end of all of this, I wish you the best of luck and safe and travels! Welcome to the Forum!!!

Sarah

[Chaos]

Hi and welcome to the forum.

Glad you are getting to go to a top notch place like Mayo for evaluation. I have been to Mayo in AZ and Cleveland Clinic but haven't been to Rochester so can't say what their program is like. Looks like you have a comprehensive set of tests included though which is good to make sure they aren't missing anything.

Hope you get some answers. Try not to freak yourself out too much in the meantime.

[Mike]

Hello and welcome!

I felt the same way when I went to the Cleveland Clinic, it's really not as bad as it sounds, at least it wasn't for me. Oh and the sweat test, I believe that's another name for the QSART test I took and it was the easiest test ever. Find something or someway to stay relaxed and calm, no one likes stress.

Good luck

[SarahA33]

Cskgeie,

Were you referring to the qsart or the thermoregulatory sweat test?

http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/09.html

http://my.clevelandclinic.org/services/neurological_institute/neuromuscular-center/diagnostics-testing/qsart

[BeforeTheMorning]

Hi,

Welcome to the forum!

That does seem like a lot of tests to have all at once over just a few days, but at least they are being thorough and I guess it might be good to have all the tests together, so you can get answers sooner. I had a whole bunch of tests before my diagnosis, but it took ages because the tests were weeks or months apart and some at different hospitals. So if you're having them all at once at one hospital at least you can go and get it over with. Hoping it all goes well.

Best Wishes,

Lyla

[Cskjeie]

Wow! Such a warm welcome.

Thank you guys for all the input, makes me feel slightly more as easy knowing this is expected... and relieved it's not drawn out over months like Lyla said, hopefully I will get some answers.

Sarah, I will be having a Thermoregulatory Sweat Test. Inside of the packet it gives a brief explanation of the procedure, it sounds like they put powder on you and put you into a hot box for around an hour...

I'll definitely take Mike's advice and try to find something to keep me calm while there. Maybe they should give me the relaxation technique class BEFORE the sweat test

I live relatively close to Rochester, so I'm hoping I'll be able to sleep in my own bed every night that these tests are done-I think that will help with some of the stress and I'll have my best chance at actually getting some sleep. Now to just find a family member or friend to haul me back and forth. haha

On a bright note, I'm having a good day today!

I hope all of your are as well,

Thanks again

[outofadream]

Hi Cskjeie,

I actually went through Mayo's program at Rochester a couple years back. And I was absolutely terrified beforehand too! I took one look at that packet and said, "They want me to get through all of this HOW?!" For what it's worth, it was definitely grueling and sometimes uncomfortable, but it wasn't as terrifying as I'd feared. So many of the people there are incredibly caring and go out of their way to make it as easy as possible to get through.

Since it's been a few years, they may have changed the program some, but definitely recognize pretty much everything on the list, so if you have any questions or just need someone to freak out with, feel free to ask anything or shoot me a message

I remember that Thermoregulatory test for sure. That was one of the top ones I was scared about ahead of time. But the tech was wonderful, made sure I was comfortable and feeling OK, told me ahead of time exactly what she was going to do, etc.. They have you wear a dust mask while they're brushing the dust on, so it got a bit stuffy, but she was very fast, so didn't have to wear it for terribly long. And then you look like the abominable dust person for awhile, which I thought was mildly humorous

And from what I remember, the "oven" part wasn't as scary as I feared either. It was an uneasy moment going into it, but it wasn't as cramped as I'd expected and lots of glass to see out. I'm fairly claustrophobic, so that at least was a relief. They increase the heat slowly, so at the beginning it wasn't too bad. By maybe the last ten to fifteen minutes, I was starting to get uncomfortable and in a hurry to get out of there. But again, the tech was very helpful, letting me know how close I was to being done, talking soothingly and making sure I was OK. They played music the whole time, which helped too….although it was a strange experience to have Phantom of the Opera music floating down from above while you're lying there covered in dust.

If there's someone who can come with you, it might help at the end. I did find I was pretty shaky and out of it for a few hours after the test, so it helps if you have someone there who can help you. Since I was in pretty bad shape with the POTS before I began the test (weak and struggling to walk), it was a challenge showering off. The dust by then has turned to this purple, jam like stuff that doesn't quite want to come off, so it can take awhile. But the cool shower water helps a lot.

After that, you're pretty much done. I do think I was slightly purple and had a dusty nose for a day or so afterwards, and as I said, definitely a bit weak and tired for awhile (and cold, which seemed backwards…maybe I'm just strange, but you might want to bring a jacket or sweatshirt just in case). I don't know what your symptoms are like with the POTS, but for me, it was an experience I wouldn't go out of my way to repeat, but it wasn't nearly as terrifying as it had sounded ahead of time.

I think the waiting ahead of time was actually the worst part, so again, feel free to ask if there's anything troubling you Best of luck and take care!

[Mike]

Oh man, the Thermoregulatory Sweat Test sounds much worse than the QSART! I have a horrible heat intolerance, thank goodness they didn't give me that one lol. Some good advise I can give is to have good communication with the doctors/nurses that are giving the tests. Don't be afraid to speak up, I had to tell the nurses I wasn't feeling well and was getting worse fast, they had to abort a test and try again after relaxing a bit, one I bailed on completely (it wasn't the tests that caused my symptoms, I was already feeling horrible). Now that's far from ideal cause you want all the info you can get, but our bodies can only take so much, if you're not doing good fight it as long as you can, but listen to your body. Having someone drive you is a GREAT idea. Ask if you can do the relaxation technique class earlier, tell them you're having some anxiety or stress with all this and you think it would help. You might get surprised, the worse is they say no.

[Katybug]

Hi Cskjeie,

I haven't been to the big clinics but have had most of the testing. I always look at it as another important piece to the puzzle. It helps keep my nerves in check. I figure if they see me on a bad day, then it might help them diagnose me and understand what I'm going through....it's very possible I'd be sick at home too. It actually useful when I'm sick in front of the doctors and that includes them seeing how hard it is to get through their appointment. Keep your chin up.

[Kitkat33]

Hi All,

I am new to the forum too and was diagnosed at a local clinic years ago but have not had the majority of the test listed above conducted and I still have a large number of questions about my condition and any potential causes. I also have been feeling very poorly recently. So, at any rate I am interested in potentially setting up a visit at a large clinic. For individuals who did go to a Mayo Clinic or a similar level clinics, how did you go about getting an appointment set up? The current cardiologist I am seeing has told me a simple test in their office basically going from standing to sitting with a heart elevation over 30+ beats per minute is all the diagnosis I need and I have received little support as additional symptoms have come to the table.

I was thinking of maybe picking out a doctor on this site listed in my area and trying to get an appointment with him or her and then seeing if potentially they could refer me because right now I am getting little help.

So just curious if anyone has any recommendations for getting a similar POTS study/examination?

Cskjeie - all the best luck. I would be nervous to but it is great that you are having all those test done and will hopefully leave with a better understanding of your condition etc.

[SarahA33]

Kitkatt33,

Hi there and welcome to DINET! It's unfortunate to read that your so dissatisfied with your current level of care.. Im sorry to hear that. The good news though is that there are places like Mayo, Cleveland, Vanderbilt, or even other doctors who might be in your area and throughout the country who specialize in dysautonomia who have a realm of knowledge! DINET has a physician list on their main website, here is the link for you:

http://www.dinet.org/index.php/physician-list

When I went got my appointment at the Cleveland Clinic, my doctor's assistant called for me, but you can call yourself also. That's how a friend of mine made her appointment with him there also. The wait time for me was almost 3 months and 2 1/2 for her, so it doesn't matter either way.

Do you have a current dysautonomia diagnosis?

Best wishes and again, welcome to DINET! Sarah

[Cskjeie]

Mike- I think speaking up will be the hardest part for me! I try so hard to hide or fight through my symptoms. Also you are so right, I think I'll call them today asking if I change switch that class before? why not! Thank you!!

Outofadream- I will more than likely be contacting you when time get closer! It's nice to hear that someone has actually had the tests at the same place I'm going to go at- and they came out alive! haha

I'm really trying to put the appointment in the back of my mind, but I'm almost counting down it it in a sense- two more month until I'll have a better idea of why this is happening, or what I can do to prevent it. Thank you for reaching out, I really appreciate it.

KitKatt- Sorry you've been feeling poorly as of late! I'm VERY new to this so I can only share with you how I got my appointment. I was diagnosed quickly at a small family physician, I wanted a second opinion because he didn't give me any recommendations to try and correct it- he just put a name to it. I called a different local clinic (a branch of Mayo) told them I'd like an appointment about it, I went and saw a lady who looked at my chart and was completely honest saying she could tell by my BP/ HR that something is up and didn't know enough about it so she was going to refer me. She did tell me to amp up my water intake until then. About a month later I got a call from Mayo in Rochester saying they wanted to schedule an appointment for 3 months in advance.. so it takes some time! But hopefully will lead to some answers! Best of luck to you!

[Kkb1216]

Hi and welcome,

I think I have done everything on your list but the sweat test. I probably proved in my TTT that I had no issues with sweating everywhere like a pig on a spit. LOL

Anyways, I think you are going to be fabulous. Attitude is 9/10's of the battle, and you've got all this time to plan your positivity attack. Think how lucky you are to cram all of this in and get it over with. Lucky, to have experts who see POTS day in and day out who can help and support you. Lucky to have experts lined up to help you get the answers you need. That's amazing.

This is all for you. If you want to ask about switching things around, do it! If you don't understand something in the packet, ask! Be your own best advocate and get what YOU need!

I'm so excited to see you come out the other side of this armed with knowledge and ready to get better. Better can be relative day to day for most of us, but ignorance isn't a powerful weapon to bring to this kind of fight.

You totally have this.

Keep the questions coming. There are so many great people here who can give you guidance and such.

-K

[hholmes13]

HI! I actually work and live in Rochester, MN and none of the tests are too bad. My neurologist there, Dr. Fealey, is actually the one who developed the thermoregulatory sweat test. It is weird and a little uncomfortable, but it isn't too horrible. If you sweat, you come out looking like you were covered in grape juice. The autonomic test can be a little rough if you are having orthostatic issues. The tilt table part of can make you feel lousy, but it is all worth it to get some answers and to hopefully help you feel better! If you need any advice on where to eat or visit or just questions about Mayo itself...feel free to message me! I'll try to help you out the best I can! I hope you find some help while you are here.

Take care and welcome to the forum!

[pooter18]

i also went to mayo in Rochester 8 years ago..the worst part for me was they took me off all my meds 3 days before i went they said they wanted me as sick as possible to do the test so they could get accurate results without the meds masking them..not sure if they still do this..i ended up in the ER the night before we left the withdraws were horrible..i had so many test done couldn't even begin to name them.. they may add to yours depending on what they find along the way..the sweat test was the worst for me i did not complete it..i cannot tolerate heat or humidity and i could not breath i tried hard to tough it out just couldn't do it..they all are very nice and explain everything before they do it..i was there for a week started as 4 days turned into 7.. they know more about POTS and Dysautonomia now then they did then so you might have better results..i did find out several things that were way out of wack and thanks to them felt bettter after about 6 months..now i am having worse issues and now going to KU for a bunch of test..they wanted me to go back to Mayo but my mother-n-law lives with us and is on Hospice and we do not have anyone to stay with her that long...so having to spread my appointments out at KU in Kansas CIty over the month of July ..they are checking from the brain all the way down to see which organs are affected by the autonomic failure..having severe problems with digestion,swallowing,balance and more..and i have agreed to be a study project for them since it is rare and it is a teaching hospital..good luck you will be fine and amazed at all the test they do and how smoothly they get it all accomplished..and they have lots of places to eat right in the hospital and stores to look through if you have a lapse between appointments..shuttle buses to get you to different buildings..you should book a hotel that offers the shuttle bus to and from the hospital and they give you a better rate since you are there all week..best wishes

[outofadream]

Cskjeie-Haha, I did indeed live to tell the tale I feel you, the waiting is absolutely nerve-wracking. For what it's worth, tough though Mayo was, I did have a much of a better idea of what I was facing and what I could DO about it afterwards, and it seemed to make a big difference. Hope the waiting is going along ok so far!

Kitkat, really sorry to hear you've been struggling I hope you've already found a way to get in to see someone, but to answer your question, I ended up at Mayo by about the same route it sounds like you're pursuing. I'd been diagnosed by a local cardiologist, but they really didn't have much of offer in the way of suggestions for treating or managing it. Since things kept getting worse and was having an increasingly overwhelming and confusing array of symptoms, I wound up going to several specialists in the area to try to get some answers, and I think one of them (local neurologist?) referred me to Mayo.
Hopefully, either way you've been finding more answers and support…either with a specialist somewhere in your area, or if they don't know what to do, hopefully they have or can refer you to someone (either doctor or clinic) who can be of more use. Hope things are going better for you now...

pooter18, that sounds like an awful experience! I'm so sorry you're going through a bad time again now too. Best of luck on your July appointments, hope everything goes smoothly.