Cleveland Clinic Experiences

[trice125]

I'm interested in hearing about other people's experiences at the Cleveland Clinic especially if you have seen Dr. Jaeger.

[Kellysavedbygrace]

I have seen Dr. Jaeger and am so thankful for my experience at Cleveland Clinic. The diagnostic information about my case has been invaluable and has lead me to better understand my condition and eventually led me to be diagnosed with Systemic Mast Cell Disease, the underlying condition which makes my NCS and POTS secondary.

I did a couple of things that looking back really made the experience:

1- kept calling scheduling and his office to make sure on my one trip I would get all the tests needed

2- asked for consults w neurology and cardiac rehab

3- asked and got a follow up appt w him after the testing - we stayed an extra day beyond the 3 day planned visit

4- stayed at the Intercontinental Hotel attached to the hospital so I never had to go outside (important for a FL girl in Feb)

I also saw Dr. Fouad and Dr. Polston. I imagine since Dr. Found has retired this has left quite a hole in the dept because she was essentially running all the diagnostics so he is probably overwhelmed - unless they've replaced her. Dr. Jaeger was excellent to speak with, I learned a lot from him as he described the various theories for Dysautonomia out there, and one in particular that they were inn the middle of studying.

All that said, this is a great place for diagnostics and not treatment- although today I still use both treatments both he and Polston recommended: Mestinon and strenuous exercise. Dr. Jaeger is very intelligent and has his own interpretation of what is going on in autonomic dysfunction. He is not always on the same page as his counterparts in other med centers and has more of an abrupt bedside manner - but I'd go back to him and recommend him to others for diagnosing autonomic dysfunction. Note: of all the tests, the Hemodynamic lab was the most interesting where they looked at my circulation supine and sitting up under a fludroscope where I learned my BP and HR stay the same but my cardiac output decreased 50% when sitting up. Yikes. W severe blood pooling and Hyperkinnetic circulation.

Have you been? Or are you going?

[angelloz]

I went to the Cleveland Clinic abouy two years ago and saw Dr Jaegar...I did get some good informayion but wished I had been able to stay longer for more follow up. I was found to have hypovolemia, but wished I had had the test Kelly mentioned. One problem nay be that I went before I was as bad as I am now..maybe too soon?

Kelly could you share some of his theories on autonomic dysfunction??

Angelloz

[FarmerAmy]

Kelly,

Thank you so much for posting this! I feel like I would really like a more specific diagnosis so that I can better understand the mechanisms for my POTS. Right now I feel like I am shooting in the dark whenever I try a new treatment because I don't understand what I'm trying to tweak in my body.

Amy

[RunningWild]

I didn't have the best experience, but I also didn't see Dr. Jaegar.

I felt like the results of my two days of testing was: "She has POTS"

which I already knew. Good thing my fam lives in Cleveland so it wasn't a completely wasted trip.

[trice125]

I have autonomic dysfunction and I went to see Dr. Jaeger the week before Christmas. I had three days of testing and consults with GI and nuero but they were unable to do the Hemodynamic testing due to the fact that they were unable to get a good enough IV access. I have been given access to the blood results but otherwise I haven't been told anything besides that Dr. Jaeger and the neurologist want to wait to make any conclusions and/or recommendations until they have all of the testing back (the GI I saw was a joke and I still have one more week left on the 30 day heart monitor). Dr. Jaeger's secretary called me yesterday though to make me aware that Dr. Jaeger was already trying to set up another visit for me to come see him again and to do more testing including the Hemodynamics. Dr. Jaeger gave me handouts about resources and the testing he ordered but otherwise I wasn't given anymore info so I'm quite confused.

[Monstrosity]

He was the first to diagnose me.

Pro's:

Very nice and easy to talk to.

Appears smart on dysautonomia

Dosent like the term POTS feels its a garbage can term

Will rule out anything heart related

Will recommend you to a Neuro

Cons:

He dosent seem to have a good grasp on the neurological side of our dysfunctions (granted he's not a neurologist)

The Cleveland Clinics billing department is horrible...

I also saw Dr. Cherion and Dr. Polston who are both Neurologist. Cherion is stuck on that I have mygraine syndrome and Polston grew frustrated with me quickly...

The clinic has fantastic diagnostics but treatment hasnt been all that great. At the same time I'm not one for treating my symptoms I'm all about finding the root cause and fixing it!

[trice125]

He did refer me to neuro but he couldn't get me in to see one that specializes in autonomic dysfunction so I ended up seeing a different one who called me yesterday to tell me that most of my autonomic tests came back normal. She wants to start me on mestonin but my local GI doctor just started me on linzess Monday so I have to wait a couple of weeks before starting the mestonin to give my body time to adjust.

[arizona girl]

Hey all,

One thing I've noticed after going to a few of the research centers like vanderbilt, ucla and even mayo. They all have their research theories they are working on. So if you fit their criteria great, if you don't not so good for you, because they don't know what to with you or even want you.

For example Yan Go at ucla is really studing sleep disorders and wouldn't do a tilt table on me. She was though the first one to have me do the poor man's tilt at home. After doing that a few months, at my follow up, when she found out I was going up on standing. She said I needed to go to mayo that I could have something scary like even cancer. I know now she was referring to carcinoid syndrome. Which my local neuro ruled out. She did point me in the right direction, but wasn't able to work me up herself.

Vanderbilt is really studying the salt loading and volume issues, and though my valsalva showed I went up, they didn't address that, didn't do a tilt as I expected, but based on my history started me on the salt protochol. Which didn't help me at all.

By the time I made it to grubb, I'd finally had a tilt done locally and with that had been referred to an autoimmune neuromuscular neurologist who did my skin biopsy which came back positive for small fiber neuropathy the cause of my autonomic dysfunction. I had this info for Dr. Grubb and he asked for the catecholamines to be done. He diagnosed hyperpots due to sfn even before the lab confirmed it and agreed with my neuro's diagnostics. He is so far away I have not made it back to him, but am still on labetalol he prescribed. My care with my neuro eventually showed I had an immune deficiency and with further testing I also have autoimmune thyroid, skin and a lupus like autoimmunities. I have been improving some what with my new treatment plans, we are still tweaking though.

As you can see my pots was a result of several secondary causes. This was a long (years/decades) and difficult journey, but I stuck with it. I admit though I did give up a few times only to get worse and have to get back on the horse again. I also read everything I could on dinet, which helped me figure out where I needed to look.

So I encourage you to trust your own instincts. Read everything you can. Discard what doesn't fit you. A doctor doesn't always have it right. Had I stopped with salt loading and not looked further, I would not have gotten to treating my underlying causes, which are pretty significant medical conditions.

While I wish I wasn't sick the validation of knowing I'm not crazy and there really were some signficant medical conditions, has lifted the stress and need to prove there really was something wrong. As many of you, "I don't look sick" and I'm fairly intellegent and have an upbeat demeanor. How could some one that looked and acted like me actually be sick!! I'm proof you can look good and still be very ill and still have a working mind. I am now getting the care and treatments I need.

Hope my story helps you, get there faster then I!