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Hello fellow dysautonomiacs

I hope that this finds some people doing well. I was thinking of going to Vanderbilt. Is there any doctor that people would specifically recommend there? I had heard of Dr. Raj, but I don't really know. I would appreciate people's responses whether it is private message or not. Thank you so much.

Warm regards,

Kit

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Hi Kit,

I saw you'd been a member for a while and took a look a you previous posts. What ever happened with the aag diagnosis and treatment? FYI, I don't have the aag, but I do have autoimmune/immune issues and I get ivig which has helped.

Kelly saved by grace recently went to vandy through their reseach program. If you could do that, maybe go that way. She had a good experience with Dr. Biagioni, however I don't know if that changed her treatment plan or not. I wished I had seen him. I did see Raj early on and it wasn't as successful for me, as the focus really was about salt loading. Salt loading didn't help me as it turned out I have SFN and autoimmune issues. A lot of Vandy's research focuses on how the body uses salt to improve autonomic symptoms. Most of their clinical trials are focused in that direction. Most of the research hospitals all have their particular spin on what they are looking at. If you fit that type of patient, then you have a good experience, if you don't sometimes they won't even see you. So it really does depend on what your hoping for and your subset of symptoms.

What ever happened with cleveland clinic? From the posts I've read here over the years they may be good at diagnosing but not good with followup and treatment plans you take home.

These are just my thoughts from my own experience. I really hope you can get the help you need.

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Tthanks so much for the response. I should have said a little more about my condition I guess. I have autoimmune issues, maybe lupus, but they are mostly watching me. I got dysautonomia after a virus and have all of the symptoms except for the high heart rate. I know that sounds weird. I have the orthostatic issues, insomnia, constant headache, interstitial cystitis, fatigue, etc. Cleveland clinic was fine, except that I tried everything. Dr. Grubb has been following me, but we ran out of treatments a couple of years ago. Salt was the one thing that dr. grubb was not into because he was worried that it would hurt my head, since that has been a major problem. I have major vasoconstriction in my head which is what makes it hurt and what limits the blood to my head. Some of my past posts were probably when I was really searching. for a long time I thought that interstitial cystitis was menstrually related but it wasn't. the only follow up the Cleveland clinic suggested was getting tested for sfn, but they said there was not treatment for it, so I didn't do it.

how did you get tested for it and who gives you the IVIG? that's been one thing I've always been interested in. and yes I've had this for 13 years, so I've been here for a while, but mostly was too tired to write too much, and didn't have a lot to offer. I would like to get more involved though. thank you so much for the response.

kit.

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Hi Kit, As Arizona girl said I highly recommend going to Vanderbilt as a research patient. I was able to meet and consult with Dr. Biaggioni, Dr. Robertson and Dr. Raj. I participated in six different trials but not the salt trial. Some of the ones I did included the phenotype study, the endothelial study, the treatment trial (including propranolol and abdominal binder) and a few others I can't remember off the top of my head. I have since been invited back to participate in their salt study.

The wonderful thing about being there is that everyone on the floor is highly trained in autonomic dysfunction- what a blessingit is to have nurses who know what to expect with me. And after more than a week of testing and observation you get one of the main attending docs who reviews all the available test results and gives you a summary of their feedback. I had a long list of questions and Dr. Biaggioni stayed and answered everyone of them and told me if I had any other questions come up after the visit to contact him. At the end he suggested a couple of new meds to try and helped me understand a few things from his perspective about PoTS.

I would not suggest going there for a short clinic visit unless you had a specific test or set of tests you knew you wanted to have done and an opportunity to see a doc who had a special insight in your case. That said, I would highly recommend any of these 3 docs for a consult but keeping mind they are great in the area of diagnostics. For treatment I'd suggest staying w Dr. Grubb or going to see Dr. Randy Thompson in Pensacola. Both of these docs specialize in following POtS patients on a regular basis unlike those in the major medical centers.

So for me, I took my recommendations from Dr. Biaggioni to Dr. Thompson, who knew my case well, and got his feedback on the recommendations. For me this is the best of both worlds.

As far as the SFN testing they can do that at Vanderbilt. And n your case have they ruled out PAF? The IVIG can be ordered by most any doc. It was offered to me once at our local hospital by a neurologist but I didn't go that route. I'm not sure about the specifics of the salt testing they do at Vanderbilt but I believe they are looking for patients who demonstrate some lower blood volumes. Mine was only modestly low so I was surprised I was invited to participate in it. I'm not planning to go back at this time because it is such a long trip and difficult for me to get away w 4 kids. Please feel free to PM me if you have more specific questions.

God bless.

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You are sweet. It is actually a blessing to have these kids surrounding me and I trust God has a plan for them in the midst of this crazy circumstance. They have developed independence in many ways and I am blessed to always be home now when they get home from school. (before I was too busy in so many ways and not always available for them- but now Im always home.) Yesterday when I was crashing I had 3 back rubs from 3 different family members. Can u believe? On the flip side they are probably the only kids in town who can properly pronounce Neurocardiogenic Syncope and Postural Orthostatic Tachycardia syndrome- that can't be too normal.

The SFN is typically tested w a QSART (although could be further confirmed w a skin biopsy) and incidentally only about 30% of Dysautonomia pts actually have SFN. The IVIG was offered to me locally by a neurologist who was shooting in the dark before I had a full autonomic workup. He was speculating that I had some autoimmune involvement and had heard this sometimes was a helpful treatment. Glad I turned him down.

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Hi Kit,

I just came back from Vandy's Clinical Reasearch Center and, like Kelly, saw Drs Raj, Biaggioni & Robertson. They were all fabulous, very giving of their time (including answering my many questions!), and extremely knowledgeable. I do agree with the comments above that they are currently very interested in investigating the effects of dietary sodium, but they are also investigating many other areas which you can read more about on their website (http://www.mc.vanderbilt.edu/root/vumc.php?site=adc). The "Autonomic Disorders" and "For Patients" sections are especially good. I also found that, while I was there for research purposes, they took a very individualized approach based on my own history and symptoms. I can't comment on the outpatient clinic as I haven't been there... but by spending an entire week there as a research inpatient, you have the opportunity to see several doctors repeatedly, have a lot of testing, and they will see your good as well as your bad days. You can cover a lot of territory, if that's your goal. Feel free to pm me any time.

-Heather

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thanks so much everyone. i've had a lot of the tests, so i'm not sure if I would go as a research patient. I had an abnormal qsart which is why they wanted me to be tested for sfn.

I had just always wondered about the ivig. probably because nothing has really helped me. anyway, my best to all of you. i'm so glad to hear such good things about Vanderbilt.

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Rama - I've been taking pycnogenol since 2006. there's nothing I notice outright from taking it but my antioxidant levels on Spectracell (Spectrox Total Antioxidant Function) were the highest the doctor had ever seen at 88.8 (they usually see people in the 40th percentile). He didn't believe me when I told him I wasn't taking any other antioxidants! My body evidently reeeeally likes it. I seem to get colds, flus, etc a lot less than I used to, and its a very "clean" option, so I keep taking it. Usually 25-30mg daily.

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