Best autonomic testing and dysautonomia treatment in the US?

[Aud E]

The most current discussion string I could find on this question is from around 2013. In current experiences (2017-2018), which dysautonomia center in the US offers the most thorough testing and most advanced treatment?

Has anyone had dysautonomia, small fiber neuropathy and an autoimmune condition where IVIg or plasma exchange was more beneficial than use of biologics?

[DizzyGirls]

We went to Stanford's Autonomic Clinic.  Don't know if it's the best because it's the only place out west that has an autonomic clinic.  Maybe Seattle has one, but we don't live near there.  We saw Dr. Jaradeh, he's the head of the clinic, for diagnosis.  We used his PA Irina for follow-up, less wait time for her than Dr. Jaradeh.

[Clb75]

I went to Vanderbilt and had a good experience. They only offer consultations though, not regular follow up care. It has been really helpful to have an official diagnosis from them.

I have another disease that causes small and large fiber neuropathy and have been on ivig for almost 6 years. It’s been really helpful for the neuropathy but in my case has not helped my symptoms of Pots. 

[Aud E]

Thank you both for the info. I also have small fiber neuropathy (possibly ganglionopathy) as well as  psoriatic arthritis, psoriasis and enthesitis. The psoriatic arthritis medication Otezla increased neuropathy pain so the next step is biologics. I am glad to hear that the IVIg helped the neuropathy at least. I have confirmation of autonomic neuropathy affecting the cardio system, gastro, temperature regulation/sweating, (have chronic insomnia)  plus I have trouble with holding my breath and shallow breathing complicated by EDS hypermobile form. The first tilt table test would be repeated to confirm or rule out POTs, so I posed the question of whether a dysautonomia center next might be able to flesh out whether the underlying causes are viral, autoimmune, or genetic for a more encompassing treatment approach. The first POTs test was solely 10 minutes long and was 3 heartbeats shy of a POTs diagnosis. No matter where I go will involve hotel stay at this point and maxed out out-of-pockets for the year. But if it could improve quality of life...? I have also had benign intracranial hypertension in the past. From reading, it seems one benefit of Mayo clinic is that they test on multiple fronts at once. I just don't know how much more info there is to gain other than the underlying basis and possibly more advanced treatment protocols. Clb75, did you tolerate the IVIg well? One thing I feel to hearing is that quality of life has not greatly improved for many despite all the data and diagnoses so it's unclear whether the science just isn't there yet and to hold out on all the spending till there are further breakthroughs. Thanks again.

[Clb75]

Yes I’ve been able to tolerate ivig, but still have some side effects after the infusion. If you try it, make sure you drink plenty of water a few days before, during and after the infusion. It can make the side effects worse if you’re not hydrated enough. 

[Aud E]

OK thank you for the hydration tip.