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Joann

Cleveland Clinic

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Hi, I looked thru the older posts but didn't see anything about this.

Has anyone been to the Cleveland Clinic? Could someone give me some suggestions on what I should try to get them to test for.

I called their Grand Consult department recently and they had me email a brief summary for doctors to review. They have called back and left a message that the doctors have reviewed and given their suggestions on what doctors I should see. I have to call back tomorrow to schedule my visit.

The nurses said the doctor, wants me to see a nuerologist, nephrologist, gastrologist (sorry my spelling is awful). She also said we can schedule a cardiologist. Should I ask for anyone in particular or should I include another specialist?

I am both nervous and excited to go. I am afraid I will go there and they will not have any answers and then I will feel so hopeless, but excited that maybe I will have some answers. I am also afraid I will go there and not ask the right questions or see the right people.

I need to make the most of this opportunity. It will cost my family a lot of money, which I know you all understand.

I have a primary doctor at home, who has basically told me she doesn't know what else to do, she has never had a POTS patient. I have a cardiologist who does have POTS patients, but not so much on hyper POTsies. I have been told she is very good, but so far, I haven't really gottenn much help. But its early I have only seen her twice, but she did say she only treats the POTS symptoms. She seems to think the heart rate and bp are her department, but the neck, chest, face and stomach pain are not.

Sometimes I think what I have is hyper POTS but sometimes I think it is something else. Some of my sympotms are like people here, but many of mine are different. I am not complaining, but I do not have problems with the shower, I don't faint. I do get high bp and pain.

If anyone could give me suggestions on what I should do on this visit it would be appreciated. I think they are booking for Feb. appts.

Thank you

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I live in Cleveland and was diagnosed at the Clinic last month. You will be in VERY good hands. One visit was all it took for me to get a diagnosis and I felt incredibly cared for and supported the entire way. I think you will be pleased with the response you get from any doctor you see while there, but would make sure the people helping you schedule your appointments understand that you suffer from dysautonomia. That way they will be making sure you are placed with specialists who not only understand your issues, but also are familiar with other practitioners who will be able to help you.

As far as cardiologists, I had great experience with Dr. Jaeger who is director of the syncope clinic and did my tilt table test. And, like you, Joann, I don't have an extreme case: I've never even come close to fainting, I don't often have episodes of tachycardia, I can shower and live my day-to-day life virtually symptom free.

If you would like to send me a message/share more details about your specific case and what you feel you need to be tested for, I would be happy to offer additional specialist recommendations. Having lived here for so long I'm quite familiar with the medical community and know others who may be able to help you as well.

Best of luck,

Jen

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I see Dr. Robert Shields, Neurologist for OHD at the Cleveland Clinic and just love him. I would recommend you see him. He is very compassionate and knowledgeable. You are welcome to pm me.

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I've been to Cleveland Clinic as well. I'd agree with both above request a full autonomic workup with Dr. Jaeger and a

Neuro consult w Sheilds. During their tilt table test they do not draw a serum Catecholemine unless it is requested and authorized. I'd suggest having that done because for me it helped me figure out what was underlying my POTS. Here are some of the tests they often do for an autonomic workup:

TTT, QSART, Hemodynamic Lab, Heart Rate Variability, Valsalva, Cold Pressor and Thermoregulatory Sweat Test.

It is a great place to go. If you can afford it, I'd recommend staying at the Intercontinental hotel which is attached to the main hospital. We went last Feb. It was so cold. Being able to get to all my appointments without going outside was nice.

Also, if you are wanting to consider exercise, try and get a consult with their cardiac rehab team. They helped me create my own protocol that has helped me go from severe exertional intolerance to intense workouts 3x a wk for an hour. Feel free to PM me too.

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Thanks for all of your advice, I do plan on PMing all of you, but for now wanted to let you know what happened with my appointments.

First Dr. Jaeger is booked until late winter/spring. The Grand Consult also known as National Consult, I think,, wants to set up my appointments for Feb 12th. But when I asked about Dr. Shields, Jaeger and Dr. Fouad-Tarazi, I was told none of them were available at that time.

Well, why am I making a trip there if none of the doctors have specialty in any autonomic area? I am willing to look at other areas also, but I definitely need them. So then she wanted to make the appointment for May!

Any how, I have an appointment for Dr. Shields at the end of January. They will try and book some of the other doctors the Grand Consult wants me to see for this day or for the Feb. date. So I may need to go twice. Not sure how I will find the money, but maybe Dr. Shields will have the answers and I won't have to come back!

Oh, and Dr. Shields had an opening for Dec 26th if anyone needed an appointment. I couldn't imagine having my records ready by them, nor do I want to leave my daughter on Christmas! I suppose if I was in the condition I had been in last May, I would have jumped on that date.

Still, I have discovered you have to be forceful and look out for yourself, I could have traveled to the Grand Consult appt in Feb and had appointments with doctors that are not familiar with dysautonomia. I think the doctor that reviewed my case, should have been more specific with the schedulers. I think I am going to call the two other doctors offices directly and see if they can't see me if they have colleagues that could.

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Good for you, Joann, sticking up for yourself! That is the best way I've found to be taken seriously: be the squeaky wheel. I'm certain that if you poke around enough they will be able to get you in with the appropriate people. I would also encourage you to keep an open mind if they suggest someone other than the person you initially planned to see. I say this because the neurologist I was to originally see was booked out by two months, and out of desperation I went with someone I'd never heard of. It turned out to be the best decision of my life.

As for the Intercontinental, while convenient, there are other, equally convenient places to stay within the area that will cost you a fraction of the price. All of the hotels in the area on are a shuttle bus line, and the Clinic is awesome about helping you find the right place to stay. Of course, if you need a local's perspective, don't hesitate to let me know that either. :-)

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