Agreeky Posted June 12, 2013 Report Posted June 12, 2013 Hello all. I visited Dr. Anna Hohler today she is a neuro. Confirmed what I have known for months, that I have some sort of autonomic dysfunction. I have to go get a ttt, a skin biopsy, and a swet test. Is there any other tests I should be getting? She mentioned small fiber neuropathy as well. So many questions I forgot to ask in the moment! She said several things can be causing this. Mentioned metabolic disorders, viruses, connective tissue disorders, and other things I forgot lol. Should I be seeing different docs for these different potential causes? Already seen about a dozen specialists. She said right now my symptoms are mild which usually means better outlook. Any advice further would be appreciated... Quote
imapumpkin Posted June 12, 2013 Report Posted June 12, 2013 I see Dr. Hohler also and she's wonderful. If you have questions she's really good about returning emails so I wouldn't hesitate to drop her a line... because you can forget to ask stuff in the moment and it's a lot of information coming at you and can be overwhelming. If she wants to you see others specialist, she'll likely recommend them as needed (for example if she thinks you might have a connective tissue disorder she'll recommend you see a geneticist) but I don't think that means you have to go out looking for other specialists.Another bit of advice-- when you have your TTT make sure you are very well hydrated beforehand! it's a doozy... Quote
Agreeky Posted June 12, 2013 Author Report Posted June 12, 2013 Wow that is great you see her too! How are you doing with your symptoms? Is it possible to reverse all this? Quote
imapumpkin Posted June 13, 2013 Report Posted June 13, 2013 I wax and wane with my symptoms but essentially I've been in a flare up for about a year now. It was def made worse by my MVP and was probably helped but set me back when i had heart surgery in January and was recovering so i couldn't exercise. Right now my primary and biggest symptom is just really debilitating fatigue, but beta blockers have helped my tachycardia immensely. Other than fatigue and brain fog i think symptoms have improved with increased salt, fluids and pressure stockings. As for reversing all this, i wish i could say i knew for sure that it can be, but everyone is different and some people get totally better and some people get better with flare ups, and some people deal with it all their lives. The doctor predicted that in my case I would probably get much better but still have flare ups from time to time. Now I'm just doing all I can to figure out how to get out of this flare up and regain some semblance of my normal life. Hope your experience with Dr. Hohler is as positive and helpful as mine has been! Quote
Agreeky Posted June 13, 2013 Author Report Posted June 13, 2013 Westernmass I am glad to hear this. Make sure you bring pen,paper, and a list of questions. Update me after your visit with her. I think I will shoot her an e-mail tmrow imapumpkin. Thanks for sharing with me. Quote
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