Cleveland Clinic On Tuesday

[RunningWild]

So I have my first apointment and first set of tests at Cleveland Clinic with Dr. Fuoad this week. Tuesday and Friday.

I was wondering if anyone could provide some tips on what I should cover with her while I'm there? Like good questions to ask, or anything that I should make sure we address?

I'm anxious but glad the time has finally come.

[jangle]

Could it be a problem with my veins? Bring a copy of my case study on inferior venal cavalry and pots patient. Give them the study as you ask so they don't just instantly reject you.

Could it be a problem with angiotensin ii? Bring both the study by Stewart and Raj about angiotensin ii and pots.

Could it be a problem with my vitamin D? Bring a copy of the case study I posted about vitamin d levels that are low in pots patients.

Ill post the links to these things later right now im on my cell phone.

[sue1234]

I'm glad you are getting in to see a "specialist". We get so tired of seeing doctors that really don't know enough to help. Definitely let us know how it goes.

[Lemons2lemonade]

That is exciting, i'm rooting for you, and i hope that you get some answers! I would ask for an angiotensin ii test and also an ace blood test. Maybe you would like to see what this doc's opinion is on theories involving, angiotensin ii, nitric oxide, autoantibodies, etc. I have a question, that dr. goodman couldn't answer for me, maybe you could ask. Why does florinef make birth control ineffective? I asked dr g. this and he said no one knows maybe your doc will have some insight?

[songcanary]

Dr. Fouad is very nice but in my experience, she likes concise questions and a very accurate medical history. Most likely she will be the one asking the questions. But if you let her do that and then choose your follow up questions wisely, she can be very insightful. She has been very kind to me and has me on a treatment plan that is working. I hope your appointment goes well and that you get some answers!

[rubytuesday]

I found my trip to the cardiac specialist in dysautonomia to be very overwhelming and was glad I had another set of ears with me (my son accompanied me). Even though it was getting into cooler weather up where I went, when I went, I intentionally wore sandals so that he could see my purplish blue, swollen feet/legs (we had a good 7 hour ride to get there and another 4 hour wait). I was very fatigued also so not at the peak of my mental functioning.

My cardiologist had faxed him all my cardiac records/testing and also spoke to him on the telephone before I visited. I use a tracker for my BPs and heart rates that I found on MedHelp.org. I keep track of my dailies and any near syncopal/syncopal episodes and plot the contrast on the graft along with notes of what I was doing at the time the episode occurred/what symptoms I had when the episode occurred. I never realized how many incidents I had in a month's time until I would go to print the graph off each month and enter my notes on the back of that page. My cardiologist liked this tool so I've just kept a habit of using it.

Write your questions down before you go and take them with you. I also took paper that I could write things down (i.e. I never would have remembered 'Delta Granule Storage Pool Deficiency' lab test that was run on my own--not even til I got to the car to write it down). The specialist was right though, I did have it, (the test was positive and he sent me results with instructions).

Travel safe.

[RunningWild]

You guys are wonderful. I will definitely write some questions down today and see what she has to say. I've heard the same feedback that Dr. Fouad is very concise with her questions- and I'm worried about the entire thing because I'm not even sure what's going on with me, let alone how to ask or answer questions about it!

[janiedelite]

It's a great idea to come prepared with a list of questions. Is it possible for you to bring a friend or family member who can be with you during the appointment? It sounds like this is a quality doctor from others' experience, but I've found it helpful to bring a partner so they can help describe my symptoms and to remember to ask all of my questions.

When I went to Mayo, my main goals were to:

- Get fully tested for all possible underlying causes for my symptoms. Many different diseases can manifest as autonomic disorders such as diabetes, autoimmune issues, lyme, etc.

- Get fully tested to see exactly how my autonomic functioning was broken. Did I have small fiber neuropathy? If so, was it affecting sudomotor or vasomotor nerves or both? Did I have autonomic neuropathy? How was my GI motility? If my GI tract was slowed (which it was), was the obstruction mechanical (a mass or kinked bowel) or neuropathic (nerves not allowing proper peristalsis)?

- Finally, based on my particular testing results, what were the best treatments available to me?

Best wishes for a successful trip!

[HopeSprings]

I'd want laying and standing catecholamines tested too and if they determine you have dysautonomia, I'd ask about getting autoimmune dysautonomia panel done. A little info:

http://www.mayomedicallaboratories.com/articles/hottopics/transcripts/2011/02-auto-dys-eval/11.html

Good luck!

[RunningWild]

Well that went way differently than I had expected :/

[sue1234]

Okay, don't leave us hanging here!

[RunningWild]

Well I had the initial appointment with Dr. Fouad, and everything I had heard about her was true thus far. I spent a good hour going over my history with the nurse, only to have to repeat the whole thing to Dr. Fouad as she typed it out (Very, very slowly). I have a hard time when I don't eat breakfast, and sitting in the little exam room with loud chicken-pecking typing was aggrivating my headache so much that I was just ready to get out of there.

I then had the QSART and left.

I feel like this was kind of a waste of a 4hr round trip drive to Ohio, plus an entire wasted day. I really hope the testing on Friday does me some good. Dr. Fouad wouldn't answer any of my questions until after the tilt test on Friday.

[songcanary]

Yeah, I know what you mean. The wheels turn pretty slowly up there. I am lucky that I am in Akron so the drive isn't so far. Try to give her a chance. My initial visit was pretty much like yours. The second was much better. I had my TTT interpreted while I was there so hopefully you'll get some answers Friday. Hang in there!

[RunningWild]

I feel like I'm trying so hard to get answers so that other people don't think I'm crazy

but all that seems to be happening, is that I'm feeling crazy myself.

[songcanary]

Are you currently taking any meds and who prescribed those? If so, there is at least ONE person out there who doesn't think you're crazy. And all of us, of course . I agree that the chicken peck typing is bad. I have had two doctors at the Clinic who did this. Must be something in the water up there.

[RunningWild]

I work in IT, so I was sooooo tempted to just be like

"oh let me type that for you."

[songcanary]

LOL I used to be a medical transcriptionist so I can imagine we were probably going the same kind of nuts, only on different days!!!

[JenLR]

I have appointments with Dr. Jaeger and Dr. Shields at CC in a few weeks. I'm a patient of Dr. Grubb's and really like him, but I'm wanting to have some more testing done because I have had several lengthy hospitalizations lately and have been feeling much worse. I'm now having second thoughts about seeing Dr. Jaeger after watching him on the ABC news interview and reading some more things on the forum. I may just see Dr. Grubb and Dr. Shields while I'm there and skip the CC syncope clinic.

Let us know how it goes for the rest of the week.

[LindaJoy]

I'm at Cleveland Clinic right now. I've been here since Monday. Had to see my Endo for my Addison's, then a vascular surgeon, which led to a doctor in vascular medicine. I apparently have some acrocyanosis going on.

Anyway, I saw Dr. Fouad back in 2005. She initially did a tilt table. I too spent the hour with the nurse, taking down every little word I said. I didn't realize how stupid I can sound until I read the "transcript" back. Anyway, after I failed the tilt table horribly (after only 7 minutes, my bp feel to 26/14), she set me up for some other odd tilt whereby I sat on a cart at an angle. When I started to feel symptoms, they ran in with a heart echo machine, then literally flung my legs into the air so I wouldn't pass out. It was actually quite comical when I thought about it later.

After all this, yes, I had POTS, but there was more testing that could be done, which I had to ask for. I had to go back about a week or two later, to do the "hand in the cold water" test, among others.

I really like Dr. Fouad as far as testing goes. She does really good testing. She talks with you and cares. She does not do follow up care, though, which has made it hard for me to get the care I need for my autonomic dysfunction.

I hope the rest of your week goes better. Where are you staying? I'm at the Guest House.

Lindajoy

[RunningWild]

Linda- Thanks for your input. I live in Pittsburgh and my parents live in Cleveland, so I just drive back and forth for the two days of testing. I will stay with them again tonight, and then take my mom along tomorrow for my tests.

I guess I'm just confused because I have already been diagnosed with POTS and I thought it would be more about finding the cause then continuing to diagnose the same issue. She did take my typed up sheet of papers and make a copy of them before I left so she could review them and follow up with me tomorrow.

The nurse also told me that while she is great at testing, there isn't much she is likely to do other than start me on a beta blocker and send results to my PCP... which I am fine with, but I think I was hoping for more options. Looks like it might just end up being referrals elsewhere.

What's acrocyanosis?