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UAB autonomic testing results.


CallieAndToby

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On 9/15/2021 at 11:13 AM, cmep37 said:

What sort of tests did you have? 

I had a full complement of autonomic testing except for sweating as they didn’t have that equipment. I don’t have POTS but rather neurally mediated hypotension. @Rexieposted the relevant information. I don’t have any symptoms of ADHD so it was prescribed off-label my my autonomic specialist. I took a low dose (took me about a month to titrate up to the lowest dose as it can give a lot of side-effects if you jump right in.) I had no problem with lying down as for me the half life was short and I took it twice a day. Half an hour after a dose I could be upright and walk normally but I doubt if it would work for the majority of POTS patients as it increases norepinephrine in the synapses.

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On 9/27/2021 at 4:19 PM, KiminOrlando said:

@CallieAndToby22 Glad you are getting help. My dysautonomia doctor retired and I need a new one. I would like to try UAB. Who did you use? Did you just call and make an appointment?

I haven't even seen a doctor appointments were way out. You can get in quick for the testing but I haven't seen anyone and I'm wondering if it's worth the trip at this point, I'm so sick. 

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36 minutes ago, Jessica said:

Callie&Toby - do you mind sharing the dysautonomia specialist you saw in Jacksonville? I am looking for one in the area. 

Sure. I've been seeing a cardiologist named Dr. Robert Luke and he's nice and mostly knows about POTS. So far we've only tried midrodine. He did do a 24 hour halter monitor which had never been done. I found a wellness center near my house that is run by a NP and does all sorts of infusions including saline but it's always booked. I guess people are really desperate for certain things that aren't readily available... Wish I could be of more help. 

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On 9/27/2021 at 4:19 PM, KiminOrlando said:

@CallieAndToby22 Glad you are getting help. My dysautonomia doctor retired and I need a new one. I would like to try UAB. Who did you use? Did you just call and make an appointment?

I self referred but you may get in sooner with a doctor's referral. The neurologists who do neuromuscular are the ones also treating dysautonomia, if you call they can give you a list of those neuromuscular neurologists or it's on their website. Hope this helps. 

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On 10/30/2021 at 8:04 PM, Jessica said:

Ok, perfect! I have a list of physicians and I’m planning to go through and see who I can get in with the soonest. Thanks again. :)

I'm still searching as well. I was too sick to go to UAB and my current doctors don't use things like mestinon, etc. I'm having trouble with constant adrenaline and I can't sleep or rest. I'd be interested in seeing your list and I think in general many patients are having trouble finding doctors that are extremely knowledgeable in autonomic dysfunction. 

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